The Navigator - Uams Myeloma Institute

Transcript

THE NAVIGATOR myeloma.uams.edu Ι 1 myeloma.uams.edu Ι 2 The Navigator Table of Contents I. Welcome II. Clinical Information III. Lab and Imaging Tests IV. Bone Marrow Procedures V. Treatments a. High Dose Chemotherapy b. Chemotherapy Side Effects c. Stem Cell Collection (Apheresis) d. Stem Cell Transplants VI. Support Services a. Social Work and Caregiver Support b. Patient Education c. Physical Therapy and Rehabilitation VII. Care Guidelines a. Nutrition b. Mouth Care c. Insomnia d. Subcutaneous Injections e. Central Line Care f. Infusor Instructions VIII. Palliative Care and Medical Directives IX. Pharmacy Services—My Medication List X. My Treatment Journal myeloma.uams.edu Ι 3 Revised 9/2016 Welcome to the Myeloma Institute! We are pleased to welcome you to the UAMS Myeloma Institute, a world leader in patient care and research in multiple myeloma and related diseases. This Patient Manual is designed to provide information to help you as you progress through your course of treatment at the Myeloma Institute. We suggest that you keep it with you so that you can refer to it and add notes. Every patient comes to the Myeloma Institute as a unique individual. The Patient Manual is not intended to replace communication and/or explanations from physicians, nurses and other health care personnel. We are here to assist you in any way we can. Feel free to contact us whenever you have questions or concerns. Below are the key phone numbers that you may need: Intake Office • New Patients • First Time Appointments 1-888-MYELOMA (1-888-693-5662) (8:00 a.m. to 5:00 p.m. CST, Monday–Friday) Myeloma Clinic (501)-686-8230 or 877-635-7240 • Established Patients (8:00 a.m. to 5:00 p.m. CST Monday–Friday) • Return to Clinic Appointments After Hours & Weekends (501)-686-5000 (operator will connect you to Myeloma MD on call) Infusion 4 4th floor, Cancer Institute (501)-686-8220 (7:00 am to 7:00 pm CST, every day except holidays; 8:00 am to 4:30 pm CST, holidays) Myeloma Inpatient Unit (501)-526-1700 Unit F7, Hospital (24 hours a day, every day) myeloma.uams.edu Ι 2 Helpful Phone Numbers Intake Nurses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8230 Phone Nurses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8230 or 877-635-7240 After Hours and Weekend Emergencies . . . . . . . . . . . . . . . . . .501-686-5000 (hospital operator will connect you) Myeloma Clinic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8230 or 877-635-7240 Infusion 4 Clinic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8220 Inpatient Unit (F7) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-526-1700 Social Work Department . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8145 Dieticians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-526-6990, ext. 8641 or 501-554-4439 Chaplain (on-call pager, 24/7) . . . . . . . . . . . . . . . . . . . . . . . . 501-688-2060 UAMS Police . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-7777 UAMS IT Help Desk (MyChart) . . . . . . . . . . . . . . . . . . . . . . . . 501-686-8555 Wheelchair/Golf Cart Transportation (weekdays) . . . . . . . . . . . . 501-686-7600 UAMS Patient & Guest Services . . . . . . . . . . . . . . . . . . . . . . . 501-686-7600 Monday-Friday, 5:30 am to 11:00 pm Saturday/Sunday, 6:30 am to 11:00 pm Cancer Institute Welcome Desk . . . . . . . . . . . . . . . . . . . . . . . .501-603-1133 Patient Support Pavilion . . . . . . . . . . . . . . . . . . . . . . . . . . . 501-686-5578 myeloma.uams.edu Ι 3 A Message from Dr. Gareth Morgan Welcome to the Myeloma Institute, a Chancellor’s Center of Excellence at the University of Arkansas for Medical Sciences. We partner with the Winthrop P. Rockefeller Cancer Institute in providing world-class cancer care based on cutting-edge research. At the Myeloma Institute we treat more patients with multiple myeloma than any other center. Our specialized and experienced staff provides superb medical care in an atmosphere of friendliness and compassion. The clinical and basic science programs at the Myeloma Institute are fully integrated, with a unique bridging of bench to bedside and back, permitting rapid application of scientific breakthroughs to patient therapies. Our innovative clinical and basic science programs are highly regarded nationally and internationally and serve as models for other programs. We have fundamentally changed the course of the disease through novel diagnostic procedures and therapeutic interventions. The Myeloma Institute has seen more than 11,750 patients from across the United States and more than 50 countries around the world; yet, our focus remains on the individual patient. We provide our patients with a thorough understanding of their disease and develop personalized treatment plans aimed at long-term disease control and a high quality of life. We remain committed to curing multiple myeloma. Thank you for entrusting us with your care. myeloma.uams.edu Ι 4 The Myeloma Institute and the Team Approach The Myeloma Institute is committed to accelerating curative therapies for multiple myeloma and related disease entities through innovative clinical and basic science research and high-quality, comprehensive patient care. Founded in 1989, the myeloma program at UAMS has grown to be among the largest in the world. More than 11,750 patients from every state in the United States and more than 50 foreign countries have come to the Myeloma Institute to receive the latest and most promising medical treatment. Approximately 500 new patients are evaluated and treated each year. With a cancer as complex as multiple myeloma, the experience gained from a large volume of patients is a distinct advantage. The Myeloma Institute’s philosophy is based upon a results-driven belief: Tremendous strides in improving outcome opportunities for myeloma patients stem from novel research and its applications. With a team of leading scientists and clinicians, the Myeloma Institute translates advances in the laboratory to breakthrough clinical treatments. Patients receive the most up-to-date care with an emphasis on personalized medicine for optimal outcomes. The Myeloma Institute has made and continues to uncover scientific advances that translate into therapy: • • • • • • • • • • • First to initiate use of tandem stem cell transplants First outpatient stem cell transplant First stem cell transplant for patients over the age of 70 Initiation of idiotype and dendritic cell vaccines Creation of stem cell purification process Introduction of thalidomide as anti-angiogenesis therapy Identification of Chromosome 13 and high risk cytogenetics Creation of mouse model for studying growth of myeloma cells Combination anti-angiogenesis therapy and chemotherapy Identification of molecular subgroups of myeloma Development of distinct treatment strategies for high-risk and low-risk myeloma, as defined by gene expression profiling myeloma.uams.edu Ι 5 The Team Approach A unique feature of patient care at the Myeloma Institute is the team approach. A multi-disciplinary health care team, specially trained in diagnosis and treatment of all aspects of myeloma and related diseases, meets weekly to review patient care plans and discuss optimal treatments. Patients benefit from the combined expertise contributed by a comprehensive array of specialists. The team may be comprised of: • Myeloma Physicians • Hospitalists • Radiologists • Pathologists • Infectious Disease Physicians • Advanced Practice Registered Nurses (APRNs) • Physician Assistants (PAs) • Registered Nurses and Registered Nurse Practitioners • Pharmacists • Clinical Research Staff • Social Workers • Nutritionists Additional medical specialists, such as cardiologists and nephrologists, may be consulted as necessary. Every patient is assigned to a primary clinical physician. Your primary physician will always be the one who is ultimately in charge of your care. During the course of treatment, whether on an inpatient or outpatient basis, you may not be seen daily by your primary clinical physician, but you will be seen by a team member who is familiar with your care plan and your medical needs. You can be assured that any major treatment decisions or changes will be discussed with you and your primary physician before being implemented. myeloma.uams.edu Ι 6 New Patient Intake Office and Insurance Department Intake Office The New Patient Intake Coordinators are your first contacts at the Myeloma Institute. They work together with you to be sure that all pertinent referral and insurance information is obtained prior to your first visit. The Intake Coordinators manage your first time visit, including diagnostic testing and an evaluation by a clinical physician in the Myeloma Institute. An Intake Nurse will visit with you when you arrive to review your schedule of diagnostic testing, explain what to expect throughout the 3 to 5 days of testing, and address your concerns. Insurance Department After you have seen the physician in the Myeloma Institute clinic and treatment has been proposed, you will be referred to a Clinical Case Manager (CCM). The CCM is a specially trained registered nurse (RN) who confirms coverage of proposed treatments with insurance companies. The case manager obtains pre-certification and prior authorization for treatments that your physician prescribes. Verification of coverage must be done, and pre-certification and/or prior authorization must be obtained before treatment can begin. The CCM is in close communication with your Myeloma Institute physician to make sure that treatment can proceed. Ask for a case manager while in the exam room with your doctor if you have concerns about coverage. During the course of your treatment, the case manager provides your insurance company with any treatment results and clinical trial/ protocol information that they might require in order for them to approve your continuing on to the next treatment phase. Some insurance companies may consider certain treatments, even stem cell transplantation, to be medically unjustified and may therefore deny coverage. If this should happen, your case manager will work closely with your Myeloma Institute physician to pull together information that documents justification for the treatment and which will facilitate an appeal to the insurance company for treatment coverage. The Myeloma Insurance Department is committed to giving patients the most accurate and up-to-date information about financial and insurance issues. The staff aims to secure insurance related decisions quickly so that treatment at the Myeloma Institute can proceed without delay. Each insurance company has its own rules about pre-certification for treatment. If you are aware of pre-certification requirements from your insurance company, please inform your case manager. The more information you can share with us, the better we can assist you. You can be assured that we will protect your privacy as per the regulations of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA protects the privacy of your personal health information (PHI). Your case manager works as a liaison with your insurance case manager and your physician in the clinic. Additionally, your case manager can assist with ensuring that there will be adequate coverage for services and medications that you may be receiving in your home community. myeloma.uams.edu Ι 7 Myeloma Institute Insurance Contacts Contact Extension Direct Phone Fax Benefits & Pre-Authorization Specialists for outpatient diagnostic testing Advanced Beneficiary Notice (ABN) Specialists Courtney Ramsey 2509 686-8230 526-7803 [email protected] New Patients Lisa Dickerson 2462 686-7770 526-7803 [email protected] Return Patients Karen Williams (A-G) 2458 686-5315 526-7803 [email protected] Catonya Armstrong (H-O) 2459 686-5632 686-6433 [email protected] Carol Arnold (P-Z) 2463 686-5633 686-6433 [email protected] Medication Prior Authorization and FMLA Kimberly Hudspeth, RN (A-G) 2511 526-6990 526-7781 [email protected] Tracey Williams, RN (H-O) 8139 526-6990 526-7781 [email protected] Jeanette Perkins, RN (P-Z) 2474 626-6348 526-7781 [email protected] RN Case Manager/Inpatient Admission and Utilization Review Mei Shipp, RN (A-L) 2525 603-1761 603-1542 [email protected] Terry Black, RN (M-Z) 2513 603-1762 603-1542 [email protected] Insurance Manager Sandra Wilson, RN 2526 603-1758 526-4285 [email protected] myeloma.uams.edu Ι 8 How to Get to the UAMS Campus / General Parking Info UAMS is easily accessible from Interstate 630 (Exit 3B - Pine/ Cedar). Hospital/Psychiatric Research Institute: From I-630, take the Pine/ Cedar Street Exit and go west on 7th Street to Entrance 1 at the intersection with Hooper Drive. Outpatient Center/Spine Institute/ Myeloma Institute/ Cancer Institute/Eye 430 Institute: Take the Pine/Cedar Street exit and go north on Pine Street. Turn left at Entrance 3 onto Capitol Avenue. 40 Ar kan s as Riv er 630 Exit 3B Pine/Cedar Little Rock National Airport 440 30 530 Aging Institute/Family Medical Center: Take the Pine/Cedar Street exit and go west on 7th street to Jack Stephens Drive, turn north and enter the appropriate parking lot. Entrance 2 and Parking 2 are accessible from Markham Street at the intersection with Hooper Drive. Cost to Park Patient/visitor parking is $1.00 for the first hour up to a maximum of $7 a day. There is no charge for the first 30 minutes. A weekly pass is available for $10. Patients who have their ticket stubs validated in their respective clinics receive FREE parking. Valet parking Valet parking is currently offered at the Main Hospital, Outpatient Center, Cancer Institute, Jones Eye Institute and the Stephens Spine and Neurosciences Institute. Valets will park the cars of patients and visitors weekdays from 7 a.m. to 5:30 p.m. at both locations; the cost is $10. We cannot validate valet parking. Mini Shuttle and Wheelchair Transport In our constant effort to provide a wonderful experience for you and your loved ones, UAMS offers a golf cart indoor shuttle to assist you in moving through the expansive campus. The shuttle runs during the day Monday through Friday and makes numerous stops around the hospital and the outpatient areas. Additionally, wheelchair assistance is available until 11:00 PM. Our trained Guest Services staff is available at the information desks. They can also be reached via courtesy phones or by calling (501) 686-7600. Our representatives are happy to assist you in any way during your time at UAMS. myeloma.uams.edu Ι 9 A C A Landmark B C F G C A D Landmark B C (4th floor) Cancer Institute F B G C F Wing H Wing A B Hospital (4th-8th floor) Parking 1 H Wing myeloma.uams.edu Ι 10 A Landmark Elevator Dr. Information Route St. Parking Parking Information Information Emergency A A Landmark (1st floor) F (1st floor) D Parking Elevator Elevator Parking Eye Institute Eye Institute Elevator Elevator Landmark (1st floor) Outpatient Center F D (4th floor) Eye Institute (1st floor) D Cancer Institute F F (1st floor) (4th floor) (3rd floor) Capitol Ave. Shuttle Route (2nd floor) (3rd floor) Parking 3 G Capitol Av Shuttle Valet Route Parking (2nd floor) Spine Institute Spine Institute G Parking 3 Cancer Institute D F Eye Institute Dr. Emergency Jack Stephens Emergency Shuffield Emergency (1st floor) Outpatient Center (4th floor) Outpatient Center F (4th floor) Cancer Institute D D Jack Stephens Parking Parking 1 Level Shuffield Emergency Level Parking 1 B (1st floor) Hospital (4th floor) Outpatient Center C Central Building Parking 2 (4th floor) Cancer Institute Dr. Map Legend r. Parking 1 entrance B (1st floor) Hospital C Central Building Parking 2 Jack Stephens Pathway C Gift shop Cancer Clinics D Cancer Institute Cancer Education Center D Hospital Cancer Institute D H Cardiac Non-Invasive Head and Neck Clinic Parking 3 Laboratory B I (3rd floor) Parking 1 Case Coordination C Infusion Center Cash Machines C Infusion Center -- Myeloma Level Cath Lab B Intensive Care Unit Capitol Ave. Center for Addiction S L F Research Parking 1 A Labor and Delivery B Social Work C Emergency Chapel B M Speech Therapy G Level CT Scan B Mail room C G Outpatient SpineCenter Institute Eye Institute G D Maternal Services B (1st floor) Shuffield (1st floor) Surgery B Diagnostic Center C Medical Records C Surgery -- Outpatient E Dialysis B Medication Assistance C Spine Institute Myeloma Institute Outpatient V (2nd floor) E Transplant Unit C Vascular Lab C Ear, Nose and Throat Clinic G MRI D Volunteer Services EEG Lab C MRI-1 Parking 1, level 3 EKG B Cancer Institute D Myeloma Institute D Emergency Parking 1, level 1 Hospital B Map Legend Eye Clinics F N W Eye Institute F Map Legend Neonatal Intensive Eye Surgery F Walker Family Clinic A Care (NICU) B Pathway Parking O Pathway Optical Shop F Outpatient Center E Valet Elevator Parking Shuttle Outpatient Clinics E A Psychiatric Institute Use Elevator B in the hospital lobby on the first floor toLevel reach all patient rooms. Psychiatric Institute P Patient Rooms B PET Scan C B Pharmacy -- Outpatient E C Physical/Occupational C Therapy B D F Physical Medicine and C Rehabilitation G D Eye(4thInstitute E floor) Physical Therapy Outpatient Center (4th floor) Outpatient G F D P Psychiatric Institute A Cancer Institute D Psychiatric Outpatient (1st floor) B Services A Psychiatric Patient Rooms A Pulmonary Function Testing B D G R D Radiology B D Radiology -- Outpatient E B Landmark B C Destination Hospital Destination A F G (1st floor) F Wing Hospital (4th-8th floor) 3. Follow the 4. Use the signs along Pathway — the Pathway and the Hospital Use Elevator B in the hospital marked with rings elevator directory Central Patient Rooms Parking 1 entrance lobby on the first F F floor to reach all F on the floor —Building to at your landmark patient rooms. the landmark to find your exact C E Wing elevator. destination. D D A F Administration -- hospital C Food and Beverage Admitting B Lobby Café Apheresis B Cafeteria B Audiology G Coffee Shop (Doc Java) Parking 1 Gathering Place B Metro Deli Bone Marrow Biopsy Clinic C Level Outpatient Café Brain Imaging Research Center A G Breast Center E Gamma Knife Destination D Parking 1 entrance destination and its landmark elevator below. 2. Locate the elevator for your destination on the building diagrams. Parking 2 Cedar St. egend ric How to use this directory H Wing1. Identify your spital each all r. University of Arkansas for Medical Sciences path.way per D Hoo E Wing per D Hoo s r. per D Hoo Hospital Patient Rooms Cedar Family Home 2 Markham St. N Biomed Buildings Parking 1 uS t. 4th St. Cancer MRI PRI Outpatient Center Dr . er Ho op Hospital tea Pine St. Central Building ED II Pla Cedar St. College of Public Health Dr. Hoo per Admin West Jack Stephens Dr. Parking 2 Parking 3 Capitol Ave. Eye 3 Spine I Dodd Wilson Education Building Shuffield Dr. Family Med Aging Pine St. VA Hospital 6th St. Cedar St. Jack Stephens Dr. 1 W 7th St. W 7th St. W 7th St. W 7th St. INTERSTATE I-630 INTERSTATE I-630 Off ram p 3B Exit 8th St. 1 Hospital campus entrance Emergency Parking Off 3B Exit ram Building Entrance Parking Entrance myeloma.uams.edu Ι 11 Patient Discharge p Family Home Places to Eat 2 Markham St. N 3 Dr . 1 Parking 1 tea uS Pine St. Cedar St. t. 4th St. 5 Parking 3 4 Outpatient Center er Ho op Hospital Pla Biomed Buildings Cancer 2 PRI Jack Stephens Dr. College of Public Health Central Building ED II MRI Admin West Hoo per Dr. Parking 2 Capitol Ave. Eye 3 Spine I Dodd Wilson Education Building Shuffield Dr. Family Med 6th St. Pine St. 6 Aging Cedar St. VA Hospital Jack Stephens Dr. 1 W 7th St. W 7th St.hours a day, 7 days a week. 1 Lobby Café — First floor of the hospital, open 24 W 7th St. Serves a variety of gourmet coffees, pastries, Wsalads, sandwiches, pizza and 7th St. Off 3B Exit ramp soup. Follow signs to the B elevators. I-630 Off ram I-630 p 3B Exit 2 Doc Java — First floor of the Central Building on the Pathway between the B 8th St. and C elevators. Doc Java offers gourmet coffee, soft drinks, sandwiches, soup campus entrance 1 Hospital and fresh-baked goods. Hours are 6:30 a.m. to 4:00 p.m. Monday through Friday, and all orders are to-go. Emergency Parking Building Entrance Parking Entrance Patient Discharge INTERSTATE INTERSTATE 3 Cafeteria —Ground floor of the Central Building, open from 6:30 a.m. to 7:30 p.m. Monday through Friday. Hot and cold breakfast items are available. Lunch and dinner options include burgers, salad bar, traditional entrees and vegetables, a Mexican grill and pizza. Follow signs to the C elevators and go to the ground floor. 4 Outpatient Café — First floor of the Outpatient Center near the E elevators. The cafe offers a variety of breakfast items, made-to-order sandwiches and beverages. Hours are 7:00 a.m. to 3:30 p.m. Monday through Friday. Limited seating is available. 5 The Gathering Place — Ground floor of the Cancer Institute, open from 7 a.m. to 4:30 p.m. Monday through Friday. Serves gourmet coffee, sandwiches, wraps, salads, soup and desserts. Seating is available. 6 Generations Café — Ground floor of the Institute on Aging, open from 8 a.m. to 9:30 a.m. and 11 a.m. to 1:30 p.m. Monday through Friday. myeloma.uams.edu Ι 12 Directions to UAMS Winthrop P. Rockefeller Cancer Institute From East of Little Rock • Take I-40 West to I-30 West • Merge onto I-30 West (Exit 153B) toward Little Rock • Take Exit 139B onto I-630 West • Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street • See box below for parking directions. From Southwest of Little Rock • Take I-30 East toward Little Rock • Take Exit 129 to I-430 North toward Fort Smith • Take Exit 6 onto I-630 East toward downtown Little Rock • Take Exit 3B (Pine/Cedar Streets) and turn left onto S. Pine Street • See box below for parking directions. From Southeast of Little Rock • Take I-530 north toward Little Rock • Take Exit 138A to merge onto I-30 East toward downtown • Take Exit 139B onto I-630 West • Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street • See box below for parking directions. From Little Rock National Airport • Take I-440 West toward Little Rock • Take Exit 138A to merge onto I-30 East toward downtown • Take Exit 139B onto I-630 West • Take Exit 3B (Pine/Cedar Streets) and turn right onto S. Pine Street • See box below for parking directions. From Northwest of Little Rock • Take I-40 south toward Little Rock • Take Exit 147 to I-430 South toward Texarkana • Take Exit 6 onto I-630 East toward downtown Little Rock • Take Exit 3B (Pine/Cedar Streets) and turn left onto S. Pine Street • See box below for parking directions. For the health of your child and the safety of our patients, we ask that children age 12 and younger remain on the first floor in the lobby or café. We realize that this may be a challenge for patients without childcare options. If you must bring your child, please visit the Welcome Desk when you arrive and they will assist you in finding an appropriate and safe place to wait with your child. Patient drop off and parking: • Turn left at Entrance 3 onto West Capitol Avenue • Turn right onto Jack Stephens Drive. • Proceed straight ahead to the Cancer Institute’s covered circle drive. • Drop off your patient at the front door. A valet will be there to assist you. • Exit the circle drive and go left into Parking 3. • Park on levels 2B-5B (north side). • Take the Cancer Institute elevators to 2B for access 40 Ark to the Cancer Institute’s entrance. ans as R iver 67/167 Self parking: • Turn left at Entrance 3 onto West Capitol Avenue • Turn right into Parking 3 • Park on levels 2B-5B (north side) • Take the Cancer Institute elevators to 2B for access to the Cancer Institute’s entrance. 30 630 Exit 3B Pine/Cedar myeloma.uams.edu Ι 13 s Riv 440 30 er Little Rock National Airport 430 Bring in your parking ticket stub and get it validated at your clinic for free parking. Arkansa 530 Guidelines for Visitors Inpatient We prefer only two visitors per room. There are family waiting areas for larger groups just outside the unit. Children under the age of 12 may visit the inpatient unit under special consideration for the well-being of the patient. Children must be accompanied by an adult at all times and visitation may only occur within the inpatient room. Children must be with an adult at all times. Within the hospital, children may not be in the family waiting areas – they must stay in the patient’s room or the Children’s Resource Room for the length of the visit. The Children’s Resource Room is located on the first floor of the Main Hospital – H-1191 (near the Lobby Café, behind the information desk). This area is designated for families to visit with children under the age of 12. Children must be supervised by a responsible adult over the age of 18 at all times in this area. Outpatient Children under the age of 12 are discouraged from visiting the Myeloma Clinic. Many of our patients come to the clinic with compromised immune systems. Children have unique immunity and are often exposed to and carry various viruses and bacteria that will not harm them. However, adult immunocompromised patients are susceptible to all opportunistic germs and therefore, must be protected from exposure. Please know that we value the role of children in our lives, but must discourage their presence in our clinic and waiting room areas for the protection of everyone. Communicable Disease Precautions Visitors, especially children, will be asked if they have (or have been exposed) to any of the following in the three weeks before their visit: • Chicken Pox (Varicella) • Shingles • Cough • Diarrhea • Fever • Flu-like symptoms • Measles • Mumps • Rash • Rubella • Upper Respiratory Infection Do not bring children who have been immunized during the 3 weeks preceding a hospital or clinic visit. myeloma.uams.edu Ι 14 Flowers Live flowers and plants cannot be taken on to the F7 unit of the hospital. Treatment LocationsOutpatient is Preferred - Inpatient may be Necessary Whenever possible, we prefer to provide treatment on an outpatient basis. We believe that you are better off in your home environment (even if “home” in Little Rock is a hotel or an apartment). Being in a home environment can be more conducive to staying mobile and moderately active, and to resting without interruption when needed. It also keeps you further away from the disease-causing agents that are part of a hospital environment. Of course, there are times when admission to the hospital is necessary. If you need to be hospitalized, you will be admitted to Unit F7, a specialized 30-bed unit in the hospital. Air in each patient room is processed through special HEPA filters to protect patients from airborne pathogens. These rooms are equipped with laminar airflow for patients who are especially vulnerable to infection. All rooms are private and include comfortable seating and a window. Patients can connect their own computers and have access to wireless internet. Physicians on the inpatient unit, known as hospitalists, specialize in caring for patients who have been admitted. These providers are on the inpatient unit every day, Monday through Friday. The hospitalists work closely with your primary Myeloma Institute physician in monitoring your care and following treatment plans. In addition to the hospitalists, one of the Myeloma Institute physicians also covers the inpatient unit on a rotating schedule. A Myeloma Institute physician is always available on nights and weekends. Advanced Practice Registered Nurses (APRNs) also cover the inpatient unit and are closely involved in the daily care of patients who have been admitted. The APRNs and physicians work together to be sure that your care is proceeding well. A clinical pharmacist with extensive knowledge about chemotherapy drugs and other medications is available on the inpatient unit. While on the inpatient unit, a registered nurse (RN) with specialized training will provide your day-to- day care. Assisting the RN will be a Patient Care Technician (PCT). There is always an RN in charge during each shift. This nurse is known as the Care Delivery Facilitator (CDF). The CDF can be reached on pager number 395-9118. Overall management of the entire inpatient unit is provided by a Clinical Services Manager (CSM). The CSM oversees all daily activities, provides leadership, and ensures adequate staffing. The inpatient unit staff is committed to the comprehensive care of hospitalized patients. Our low patient-to-nurse ratio ensures individualized, attentive care. myeloma.uams.edu Ι 15 When you are back at home and you need some help... who can you call? The Myeloma Institute Phone Nurses! The Myeloma Institute has an expert team available to assist you with:  Reviewing lab results, report and dictations  Communicating concerns with your Myeloma Institute physician  Helping with problems you experience at home  Updating documentation  Refilling medications related to your treatment at the Myeloma Instiute For assistance while at home, call the Phone Nurses at: (501) 686-8230 or 1-877-635-7240 Phone Nurses are available M-F, 8-5pm, central time You may also e-mail the Phone Nurses: [email protected] Please allow 2 business days for responses to email requests Please Note: If you have an emergency or need immediate help, please contact 911, your local emergency room or home physician. myeloma.uams.edu Ι 16 my health. my way. uamshealth.com PATIENT PORTAL PATIENT PORTAL BENEFITS • Online & secure – 24/7 • See your lab results • Make an appointment • Refill a prescription • See your appointment • See & pay your bill • Secured messaging with doctor • And more *Some features available only after upgrading your account by filling out form in the clinic or online. myeloma.uams.edu Ι 17 myeloma.uams.edu Ι 18 What is Multiple Myeloma? What is Multiple Myeloma? Multiple myeloma is a complex cancer that develops in the bone marrow, where many blood cells are produced. In myeloma, clones (or copies) of an abnormal type of blood cell known as a plasma cell cause a variety of problems as they multiply and spread in the bone marrow cavity. As these cells multiply, they interfere with the normal production of all types of blood cells (red blood cells, white blood cells and platelets). Healthy plasma cells are responsible for producing a variety of immunoglobulins (antibodies) which protect the body from infection and disease. The immunoglobulins produced by the plasma cell clones (myeloma cells) do not benefit the body, but instead crowd out normally functioning immunoglobulins. The abnormally high levels of these immunoglobulins is a hallmark characteristic of myeloma, known as the M protein (monoclonal protein or paraprotein). How does Myeloma affect the body? Often, there are no symptoms in the early stages of myeloma; and when symptoms are present, they may be vague and similar to those of other conditions. There are symptoms commonly associated with myeloma, but myeloma may appear differently in each individual. Advances in treatment allow for many of these symptoms to be prevented and managed. The CRAB acronym may be used to summarize the effects of multiple myeloma on the body. C – CALCIUM ELEVATION (known as hypercalcemia) Myeloma cells secrete substances which interfere with the normal process of bone growth and repair. As bone destruction occurs, the level of calcium in the bloodstream rises. Symptoms of hypercalcemia include:  loss of appetite  increased thirst  increased urination  restlessness  confusion  nausea and vomiting R – RENAL (KIDNEY) DYSFUNCTION Excess M protein and calcium in the blood overwork the kidneys as they filter blood. The amount of urine produced can increase, and the kidneys fail to function normally. A – ANEMIA (not enough red blood cells) Red blood cells function to carry oxygen to the body’s tissues and organs. When there are too few red blood cells to meet this need, the result is extreme tiredness (fatigue) and weakness. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 19 Multiple Myeloma, continued (Page 2 of 3) B – BONE LOSS (thinning or destruction) Multiple myeloma is named for the presence of “multiple” areas of damage to the bone. This damage may be caused by a gathering of myeloma cells which disrupts the normal structure of surrounding bone. These myeloma cells also secrete substances that interfere with the normal process of bone repair and growth, resulting in soft spots, or osteolytic lesions. These processes weaken the bone and may result in the following symptoms:  bone pain (commonly affecting the spine, pelvis and rib cage)  loss of height (caused by vertebral compression fractures)  increased risk for fracture  hypercalcemia (see above) In addition to the CRAB symptoms, frequent infections are often associated with myeloma. This is because myeloma cells often crowd out healthy blood cells, such white blood cells, which help protect against infection. How is Multiple Myeloma diagnosed? Tests for multiple myeloma fall into several categories:  Laboratory tests (blood and urine)  Imaging studies (to look for skeletal abnormalities)  Pathology studies (biopsies)  Genetic studies (done on biopsy samples) These results are used to:  Diagnose active multiple myeloma and distinguish it from earlier disease conditions like MGUS or smoldering myeloma  Stage the myeloma and identify good or poor risk factors  Determine if treatment is indicated, and which treatment options are best  Evaluate response to treatment and monitor the status of the disease Various criteria are considered in the diagnosis of myeloma, including:  Plasmacytoma (as demonstrated on evaluation of biopsy specimen)  30% plasma cells in a bone marrow sample  Elevated levels of M protein in the blood or urine  Osteolytic lesions (on imaging studies such as PET/CT and bone survey)  Low levels of antibodies (other than those produced by the cancer cells) This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 20 Multiple Myeloma, continued (Page 3 of 3) Prognostic Indicators The prognosis is the predicted or likely outcome of a disease. Several factors are used to estimate how fast myeloma is growing, the extent of the disease, and specific abnormalities of the affected cells which is believed to give important information on how well an individual will respond to available therapy. Prognostic testing early in the course of the disease is important, because it provides a baseline to monitor response to therapy and disease status. Some of these indicators include:  Beta 2-microglobulin  Albumin level  Lactate dehydrogenase (LDH) level  Freelite serum free light chain assay  Cytogenetic chromosome analysis by karyotype and FISH  Gene expression profiling This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 3/12 myeloma.uams.edu Ι 21 Clinical Trials The Myeloma Institute has numerous clinical trials available for patients with multiple myeloma and related diseases. More than half of patients who receive treatment at the Myeloma Institute do so as part of a clinical trial. Clinical trials are also referred to as “protocols” or “studies.” Clinical trials offer treatments that might not otherwise be available. Many clinical trials study the effects of drugs that are not yet approved by the Federal Drug Administration (FDA). Other trials study new combinations of drugs; the drugs may already be approved individually, but they may not have been tested as a combination therapy. All clinical trials at the Myeloma Institute have the same ultimate goal: to improve event-free survival, overall survival and quality of life for patients with multiple myeloma and related diseases. A team of physicians, nurses, and support staff will review all of your test results to determine the best possible treatment plan for you. Many times that treatment plan will include enrollment in a clinical trial. Your physician and/or a research nurse will discuss the protocol in depth with you and describe the treatment plan and specific requirements of the protocol. If you agree to participate, a research nurse will begin the informed consent process. This can be a lengthy process (1-2 hours) as it includes reviewing all requirements to enter the protocol, all treatment steps, and possible risks and benefits. A copy of this consent will be provided to you and will be an excellent resource to you during your treatment as it provides detailed information on the use, timing, and purpose of specific therapies given. No protocol treatment can be provided until you have signed the informed consent form. The informed consent process will take place throughout your participation in the clinical trial. If consent form or protocol changes occur, you will be notified by research staff By signing the consent form, you agree to the protocol treatment, and you also agree to follow the proposed schedule of treatment, to have all required tests performed at the appropriate times, and to return to the Myeloma Institute clinic within certain time frames as prescribed in the protocol. Many of the tests performed as part of a protocol are considered “standard of care,” which means that they would be done whether or not you were enrolled on a protocol. However, some clinical trials include extra tests and procedures that are done solely for the purpose of research. You are not responsible for paying for tests that are done purely for research. If you are enrolled in a clinical trial you will be required to keep a detailed diary documenting medications and dosages you are taking and any side effects you may be experiencing. Many trials at the Myeloma Institute contain therapy that must be administered at UAMS, while other therapy may be administered by your local oncologist. The clinical trials staff at the Myeloma Institute work closely with your local physician to make sure that the protocol-required treatment plan is followed. In addition, when you return home between clinic visits at Myeloma Institute, we ask that you to fax or mail lab results on a regular basis so that we can continue to monitor the response to treatment and watch for potential harmful side effects. myeloma.uams.edu Ι 22 All clinical trials are closely monitored by the United States Food and Drug Administration (FDA) and an internal ethics committee, called the Institutional Review Board (IRB). The UAMS IRB is responsible for monitoring the clinical trials and ensuring that your safety and rights are protected while you are enrolled in a trial. You should understand that participation in a clinical trial is completely voluntary, and you may choose to withdraw from a study at any time without jeopardizing your care at the Myeloma Institute. myeloma.uams.edu Ι 23 The Myeloma Institute has an expert team of nurses that Institute will explain The Myeloma hasprotocol an expertplans teamand coordinate your care if youprotocol are involved a research of nurses that will explain plansinand study. coordinate your care if you are involved in a research study. They can help you with: They can helpl Communicating concerns with your Myeloma MD. you with: l Problems you might experience at home. l Communicating concerns with your Myeloma MD. l Updating documentation. l Problems you might experience at home. l Refilling your Myeloma-related medications. l Updating documentation. l Refilling your Myeloma-related medications. For assistance while at home, call the Research Nurses at: For assistance(501) while at686-8230 home, call theor Research Nurses at: 1-877-635-7240 (501) 686-8230 or 1-877-635-7240 You may also e-mail the Research Nurses: You may alsoAngela Bryan-Trammel, RN – [email protected] e-mail the Research Nurses: Regina V. Gibson, RN, MA, CHES, CCRP – [email protected] Angela Bryan-Trammel, RN – [email protected] Kellye Tucker, RN – [email protected] [email protected] Regina V. Gibson, RN, MA, CHES, CCRP – [email protected] Kellye Tucker, RN – [email protected] Please Note: If you have an emergency or need immediate help, please contact 911, your local emergency room, or home M.D. Please Note: If you have an emergency or need immediate help, please contact 911, your local emergency room, or home M.D. myeloma.uams.edu Ι 24 Testing and Treatment Locations Always Refer to your Appointment Packet! Your visit to the Myeloma Institute will typically involve 3-5 days of testing and treatment as well as a physician visit. You will undergo diagnostic testing and receive treatments at various outpatient locations throughout UAMS, including the Myeloma Clinic, Radiology, Infusion 4, and others. The physician may order additional testing or recommend beginning treatment immediately. While UAMS is large and may at times seem confusing, we will do our best to make sure you know: • where you are supposed to be • when you are supposed to be there • what you will be having done Tips for Finding Your Way 1. Identify your destination (in your Appointment Packet) and locate on UAMS Pathway map. 2. Identify the letter of the elevator closest to your destination. 3. Follow the Pathway – marked with rings on the floor – to the landmark elevator. 4. Use the signs along the Pathway and the elevator directory at your landmark elevator to find your exact destination. 5. Don’t panic! Hospital Transport is available to escort you to your destination—call (501) 686-7600. Triage Questionnaire and Appointment Packet Each time you come to the Myeloma Institute, you will be asked to complete a document called the Triage Questionnaire. This questionnaire is used to identify and address potentially serious symptoms. If you answer “YES” to any of the questions, you will be assessed by the triage nurse before an Appointment Packet is given to you. The Appointment Packet will include orders for all of your testing and a schedule detailing the dates, times and locations of the tests. There may also be instructions for how to prepare for a specific test (for example – PET Scan and Bone Marrow Procedures). It is important to read and follow the instructions carefully to avoid testing delays and inaccurate results. Keep this packet with you for reference. myeloma.uams.edu Ι 25 Understanding Your Test Results Many different tests are necessary to determine the status of your myeloma and how it may best be managed. These results are used to: • Diagnose and distinguish active myeloma from earlier disease conditions such as MGUS or smoldering myeloma • Determine if treatment is necessary or beneficial at this time • Assess the stage of myeloma • Identify features that help estimate risk of relapse • Determine the best options for therapy • Evaluate response to therapy and monitor the status of your myeloma over time Tests for myeloma fall into several groups: • • • • • Lab tests (normally blood and urine) Imaging (to view the bones and other structures) Pathology studies (biopsy specimens) Genetic studies (biopsy specimens) Other testing may be done to evaluate other conditions or complications LAB TESTS • Complete Blood Count (CBC) This blood test provides information on red blood cell (hemoglobin), white blood cell, and platelet counts. This information is used to estimate risk for infection and bleeding as well as to confirm or rule out anemia. • Complete Metabolic Panel (CMP) or “Chemistry” This test measures blood calcium levels (which may be increased with bone destruction) as well as testing to measure the functions of the kidney and liver (serum creatinine and LFTs). • Serum Protein Electrophoresis (SPEP) This test is used to determine the amount of abnormal (monoclonal) protein present in the blood. The presence of monoclonal protein will result in an “M” spike. This test is also used to monitor response to therapy. • Urine Protein Electrophoresis (UPEP) This test is used to determine the amount of abnormal (monoclonal) protein present in the urine. It involves the collection of urine for a 24 hour period. (Both serum and urine tests are necessary.) • Serum Immunofixation (IFE) This test is the used to identify the presence of a monoclonal protein in the blood as well as the type of myeloma protein. For example, the monoclonal protein may be a heavy chain (G, A, M, E or D) and/or a light chain (kappa or lambda). • Urine Immunofixation (UIFE) This test is the gold standard to identify the presence of a monoclonal protein in the urine as well as the type of myeloma protein. For example, the monoclonal protein may be a heavy chain (G, A, M, E or D) and/or a light chain (kappa or lambda). myeloma.uams.edu Ι 26 • Quantitative Immunoglobulins This test shows the total amount of IgG, IgA, and IgM (immunoglobulins) both normal and abnormal. An elevation of the involved (abnormal) immunoglobulin will be accompanied by the decrease of the uninvolved (normal) immunoglobulins. • Serum Free Light Chain assay (SFLC) This very specific test is used to measure the number of free (unbound) kappa or lambda light chains (protein fragments). This is especially useful for patients whose myeloma cells secrete very little or no monoclonal protein that can be detected by SPEP or UPEP. • Urinalysis This is a routine urine test that can show abnormalities that indicate kidney damage or infection. IMAGING TESTS • Bone Survey (X-Rays) This is a series of conventional x-rays used to search for damage such as bone loss or thinning (osteoporosis or osteopenia), holes in the bone (lytic lesions), or fractures. Typically, more than 30% bone loss must be present for the damage to show up on X-ray and this damage lingers even as symptoms improve or the disease resolves. This test is useful in establishing and staging a diagnosis as well as in evaluating for disease progression (checking for the presence of new lytic lesions). • Computerized Axial Tomography (CT Scan) This test is more sensitive than an x-ray and can detect lytic lesions too small to be seen on a bone survey. It can also look for soft tissue masses. Because it involves the repetitive movement of a device over the body surface, you will need to lie very still during the test. An injection of dye may be needed to get a better view. If dye is needed, a small needle (IV) will be placed into a vein (usually in the arm) to inject the dye (also called contrast media). Because this dye contains iodine, it is very important to notify the technician of any allergies (especially to iodine or fish) before the IV is started. This test will require you to avoid food and drink for a period of time before the test. Please refer to the information provided in your Appointment Packet for details. • Magnetic Resonance Imaging (MRI Scan) This test uses magnetic energy to produce an image that is more detailed than an x-ray or CT scan. It is especially useful to provide a detailed view of the spinal column. It is also useful in identifying several common complications of myeloma involving the soft tissues and organs. This test may also require the IV injection of a dye. It is important to notify the technician if you have kidney problems, or have a history of problems with a dye used for X-rays. During the testing, you will lie on a table that will slide into a tube-shaped opening in a machine. Some people become anxious during this process and are given medicine to help them relax. You will need to talk with your doctor if you feel you will need this type of medication and be prepared to stay in the observation area for several hours after the test to monitor the effects of the medication. myeloma.uams.edu Ι 27 • DWIBS MRI This test is used to look for myeloma in staging both before and after treatment. This particular type of MRI shows the flow of water in the tissue. Differences in water flow can reveal sites of tissue abnormalities and myeloma involvement. It does not require IV contrast, so it is safe in patients with reduced kidney function. • Positron-Emission Tomography (PET Scan) This type of scan is a non-invasive nuclear imaging technique which involves a short period of fasting followed by the injection of a substance called FDG (a radioisotope bonded with sugar). This substance is taken up by cells with high metabolic activity (such as cancer cells), producing areas of darkness known as “hot spots.” Strict adherence to the “PET Scan Diet” and two-day strenuous activity restriction is crucial for accurate testing. (Please refer to “PET/CT Scan Instructions for Patients” in this section of The Navigator for details. The isotope (FDG) is expensive and expires quickly, making it very important for you to arrive on time for your appointment. Your dose is specifically calibrated for you at a specific appointment time and cannot be saved for another patient. If you are unable to keep your appointment, please cancel prior to 4:00 p.m. the day before your scheduled exam by contacting the clinic at (501) 686-8230. If you are a new patient, ask to speak with the intake nurse. • PET/CT By combining PET and CT scans, we can increase our confidence that we have detected any myeloma involvement. PET/CT can identify most bone lesions at least 1cm in size, and can locate disease growing outside of the bone. • Bone Density Testing A bone density test determines if you have osteoporosis or osteopenia (bone loss or bone thinning) by using x-rays to measure the grams of calcium and other bone minerals packed into a specific bone section. The bones that are most commonly tested are located in the hip, forearm, and spine. Areas of bone thinning cause bones to become more fragile and increase the risk for fracture. This tests makes it possible to know your risk of breaking a bone and can gauge improvement with therapy. myeloma.uams.edu Ι 28 PATHOLOGY STUDIES • Bone Marrow Aspiration and Biopsy The purpose of these studies is to identify the percentage of myeloma cells in the bone marrow and how they differ from normal plasma cells. Other testing is done on these studies to estimate prognosis based on chromosomal abnormalities. (See the following Genetic Studies section.) If needed, the bone marrow aspiration and biopsy can be performed under sedation; however, this method requires advanced scheduling and a 24 hour caregiver is required. Some patients also choose to have pain medication for this procedure. Please call 501-686-8230 at least 24 hours in advance of the test to make arrangements. • Tissue Biopsy Samples of other tissues may be needed if amyloidosis or other disease outside the bone (extramedullary) is suspected. GENETIC STUDIES • Fluorescence In Situ Hybridization (FISH) This test is performed on bone marrow specimens and evaluates for the presence of a variety of chromosomal abnormalities and other genetic mutations. It is particularly useful in identifying translocations, which occur when members of different chromosome pairs trade fragments. Many common translocations are associated with plasma cell disorders, and they each vary in what they mean for the expected course of the disease (prognosis). Having this information is useful in determining the best treatment options. • Metaphase Cytogenetics (Karyotyping) Samples from the bone marrow biopsy are grown in the lab for this study. Actively dividing cells are then stained and examined under a microscope to identify the size, shape and number of chromosomes in the cell samples. The stained sample is photographed to show the arrangement of the chromosomes. This is useful because certain abnormalities are associated with an abnormal number or arrangement of chromosomes. Certain chromosomal abnormalities are indicative of higher-risk myeloma, particularly the abnormalities involving fewer than two copies of each chromosome (hypodiploidy). Normally, chromosomes are found in pairs and are known as “diploid.” How do leukemia, lymphoma, and myeloma affect the blood counts? Leukemia Leukemia is the term used for certain diseases that affect the white blood cells or leukocytes. The different types of leukemia affect the blood count differently. Persons with acute leukemia may have a low, a normal, or a high white blood cell count. The white cell count may occasionally be many times higher than the normal average count of about 7,000 white cells per microliter of blood. In addition, the leukemic white blood cells in patients with acute leukemia do not function normally. Patients with chronic leukemia always have an increase in white blood cells. myeloma.uams.edu Ι 29 Lymphoma Patients with lymphoma often have disturbances in their blood cell counts as the lymphoma may suppress red blood cell production, or because the lymphoma has spread to the marrow and suppresses all blood cell types. The lymphoma cells may enter the blood and produce high white blood cell counts made up of lymphoma cells (abnormal lymphocytes). Myeloma Patients with myeloma frequently have anemia because the myeloma cells in the marrow interfere with red blood cell production. All blood cell types may be decreased by the effects of the myeloma cells in the marrow. • Persons with a very low white blood cell count may have an increased risk of infection. • Persons with a low red blood cell count, hematocrit, and hemoglobin are anemic. Depending on the severity of the anemia and the rate at which it develops, it may result in fatigue, shortness of breath with exertion, and other limitations. • Persons with a very low platelet count can bruise or bleed more readily than normal. Will treatment affect my blood count? Chemotherapy and radiation therapy often affect a person’s blood counts. To monitor the effects, a complete blood count is usually done at appropriate intervals during therapy. The effects can vary, depending on the drugs and dosages used, and duration of therapy. Red blood cells, white blood cells, and platelets originate in the bone marrow. If the type of therapy you are receiving can suppress blood cell production in the marrow, the red blood cell count, white blood count, and/ or platelet count may decrease. By following your blood counts, your doctor can determine how the therapy is affecting your body and whether to continue therapy at the same dose or change the dose or timing of treatment. If the blood counts fall below certain predetermined levels, or if you experience new or worsening symptoms as a result of this decrease, a transfusion may be necessary. Your doctor may decide to administer cytokines to boost the amount of white blood cells and red blood cells you produce following chemotherapy treatments. Cytokines (also known as “growth factors”) are drugs that resemble naturally occurring hormones that stimulate blood cell production. The following are some names of the drugs used to help increase specific types of blood cells: • Erythropoietin (also called Procrit® or Epogen®), which helps stimulate red blood cell production; • Darbepoietin Alfa (also called Aranesp™), a long-acting form of erythropoietin that also helps stimulate red blood production but requires less frequent injections; • Granulocyte colony stimulating factors (also called G-CSF; filgrastim or Neupogen®; tbo-filgrastim or Granix®), which help stimulate white blood cell production; • Granulocyte-macrophage colony-stimulating factors (also called GM-CSF, sargramostim, Leukine®, or Prokine®), which also help stimulate white blood cell production. myeloma.uams.edu Ι 30 Should patients keep track of their blood counts? Some patients want to know the results of their blood counts and follow the changes that occur. If anemia develops, it may explain changes in your energy levels or an inability to carry out tasks that were easy to do before the anemia. If the white blood cell count drops to very low levels and fever develops, it is important to contact the physician promptly. If the platelet count is very low, you may bleed or bruise more easily; and it may be advisable to minimize activities that involve physical contact or the risk of injury. These matters should be discussed with your physician. Date Blood Count Date Blood Count myeloma.uams.edu Ι 31 Date Blood Count myeloma.uams.edu Ι 32 Arrive Scan 1st Floor, Hospital, Radiology (Inpatient and CT Procedures) q CT (501) 686-8892 or (501) 686-5750 If allergic to iodine, contact Radiology before test is scheduled. Premedication may be required. Special Instructions MRI Building is behind Cancer Institute. Take elevator in bridge between Outpatient area and Central Building. Go to bottom level and follow sign to MRI. q MRI (501) 686-6033 q Other Tests 1st Floor, Central Building, Radiology (501) 526-6526 q PET/CT (501) 526-6526 Revised 8/10 Reviewed 11/14 Ask for specific instructions Blood Sugar Pills - Take after scan is complete with food. Insulin - Call doctor for instructions. Glucophage - Take on day of scan but then do not take for the next 48 hours. (For gallbladder take nothing by mouth for 8 hours) Do not eat for 6 hours before the exam. Take regular medicine with only a sip of water. Blood Sugar Pills - Take after scan is complete with food. Insulin - Call doctor for instructions. Glucophage - Take on day of scan but then do not take for the next 48 hours. It is recommended that you have a blood test to check creatinine levels before starting Glucophage again. No special instructions Please review MRI screening sheet and contact the clinic for any questions you answered with a yes before scheduling the procedure. If you need more specific directions to MRI, please speak with the attendant at the 1st Floor Information Desk. No special instructions, but call Radiology if you have questions. 1st Floor, Hospital, Radiology q Ultrasound (501) 686-5763 MRI (501) 686-6033 No special instructions. 1st Floor, Hospital, Radiology q MUGA (501) 686-5750 Must call for all overbooks and all procedures. No special instructions. 1st Floor, Hospital, Radiology Preps can be picked up in the Radiology reception area on the 1st Floor of the hospital and the 1st Floor Outpatient Center Radiology Department. No food 4 hours before CT scan. Take any medicine with a sip of water. If you have had a reaction to radiology contrast or dye, tell the clinic for special arrangements. Blood Sugar Pills - Take after scan is complete with food. Insulin - Call doctor for instructions. Glucophage - Take on day of scan but then do not take for the next 48 hours. It is recommended that you have a blood test to check creatinine levels before starting Glucophage again. On the day of the exam please do not use perfumes, bath powders or deodorant. No special instructions. q Bone Scan (501) 686-5750 q Fluoroscopy q Mammogram Outpatient CT located in OPC, 1st Floor, Outpatient Center Location 1st Floor, Outpatient Center Diagnostic Area 1st Floor, Outpatient Center Breast Center 1st Floor, Hospital, Radiology Name of Test q Chest X-ray For all procedures (more than diagnostic imaging) contact the imaging area for specific individual instructions. * Please ask patients to bring all medications with them. Main Hospital Reception (501) 686-5750 Outpatient Radiology (501) 686-6190 Date Radiology Exams CT Scans Inpatient: Inpatient CT scans, please report to the first floor of the hospital, Radiology Outpatient: Outpatient CT scans, please report to the MRI Building for scan. MRI building is located behind the Cancer Institute. Take elevator in breezeway between Outpatient area and Central Building. Go to bottom level and follow signs to MRI. If you need more specific directions to MRI, please speak with the attendant at the 1st Floor Information Desk. The Department of Radiology at UAMS would like to thank you for choosing us to do your CT scan. As this exam is scheduled we want to outline the following instructions for this test: If you are allergic to Iodine, please tell your doctors and the technologist BEFORE the CT is scheduled.     Please take all routine medications the day of testing. If you are a diabetic, talk with your doctor before taking any diabetic medicine. Please do not eat anything 4 hours before your exam time. If you are having a CT scan of the abdomen (stomach area) and/or pelvis, please follow the instructions below: 1. You will be given a contrast to drink before your scan. Contrast can be picked up in the Department of Radiology (Inpatient or Outpatient). Start drinking the contrast one hour before your scan time. 2. Arrive 15 minutes before your appointment. You will be given more contrast to drink at this time. 3. Store the contrast in the refrigerator or cabinet. Keep out of the reach of children. We hope this will answer any questions you may have about the CT scan. If you have questions, please call the Department of Radiology at (501) 686-8892 or (501) 686-5750 and ask for a CT technologist. Again, thank you for letting us be a part of this procedure and please let us know if there is anything we can do to better serve you. Note: It is important for you to arrive on time for your appointment or you may be rescheduled on another day. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 33 Patient History & Screening Magnetic Resonance Imaging (MRI) Name Date Please Print Age Weight Month/Day/Year Date of Birth The following items may interfere with the performance of an MRI scan and some could affect your safety. Please check  the items that apply to you. Yes No Not Sure Yes No Not Sure Cardiac Pacemaker Claustrophobic Brain or Aneurysm Clips Shunts Heart Valves Vena Cava Filters Coronary Artery Bypass Clips Orthopedic Devices (rods, plates, screws, etc.) Permanent Defibrillator Wire Sutures Have Shrapnel/Bullets Insulin Infusion Pumps Cochlear (middle) Ear Prosthesis Joint Prosthesis Neurostimulator (Tens Unit) Artificial Limb Orbital Prosthesis Are you pregnant? (Females only) Other metal or Electronic Implants Are you breastfeeding? (Females only) Dentures with metal/metallic implants Do you have an IUD? Have you ever had a puncture wound of the eye or eye surgery? Have you ever worked with sheet metal or around machinery that produces metal particles or shavings (i.e. lathe, grinder, metal drill)? If so, have you ever had any metal in your eyes or removed from your eyes? q Yes q No Are you allergic to anything? If yes, what? Do you have problems with your kidneys? If yes, what? Please list other MRI or CT scans or X-ray procedures related to your current health: Please state in your own words the reason for MRI exam: This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 34 PET/CT Scan Instructions for Patients Diet  Follow these guidelines for diet the day before and up until the time of your scan. The only exception is a PET/CT brain scan – You do not have to follow this diet.  Don’t eat or drink anything (water is okay) for 6 hours before your scan (6-hour rule). – This includes no sugar such as chewing gum, breath mints, candy, sodas, fruit juices, syrup, etc., and sugar substitutes. – This includes no carbohydrates such as potatoes, pasta, rice, chips, bread, dairy products, gravy, etc. – This includes diet candy, diet drinks, milk products.  Drink plenty of water.  Eat a low-carbohydrate meal the night before your scan. This can include: grilled or pan-broiled steak; baked, broiled, or boiled chicken; grilled or baked fish or shrimp; grilled or steamed green vegetables; sautéed mushrooms; salad with or without non-white salad dressing such as vinegar and oil; butter; eggs. Insulin/Medications  You can take your medications and vitamins with water, except any that contain sugar (such as the fentanyl lollipop (Actiq)) for which the 6-hour rule applies as it does for food and drinks above.  Long-acting insulin should not be taken starting from the night before the test, and no insulin is to be taken the day of the scan.  Diabetic oral medications can be taken the morning of the test (except sulfonylureas such as glyburide, Amaryl, glipizide, etc.) This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 35 PET-CT Instructions, continued (Page 2 of 2) Exercise  Do not perform any strenuous exercise 24 hours before the test. This includes weight-lifting, jogging, etc., and yes, even walking.  Avoid chewing, sucking, or any movement that works your tongue and neck muscles the day of your scan. Other Instructions  If you have had a study with barium contrast within a couple days of this study, please notify us. You may need to reschedule your PET scan.  If you are diabetic and your blood sugar is running over 250, please let us know. You may need to contact your regular doctor to get this under control before you can have a PET/CT scan.  Avoid all tobacco/nicotine products for 4 hours before your PET scan.  You should arrive 30 minutes prior to your scheduled PET/CT scan.  If you have or are suspected of having lymphoma, breast cancer, thyroid cancer, or head and neck cancer, you need to bring someone with you to drive you home because you will probably be given a medication (oral antianxiolytic) to relax you during the scan.  You should inform us if you are or suspect you are pregnant or if you are breastfeeding before your scheduled PET/CT scan date. What to Expect  Upon arrival, your height, weight, and blood glucose level will be checked and recorded.  FDG, which is like sugar water, will be injected into one of your veins. The risk of any reaction to this injection is essentially zero.  You will be kept warm if you feel chilled. You can ask for a blanket if needed.  You will be asked to remain calm and to avoid use of muscles, including talking, chewing, rocking, etc, for about 60 to 90 minutes. You are allowed to go to the bathroom, and you may drink water.  During the scan which takes about 15 to 60 minutes, you will lie on a comfortable table that moves slowly through a large ring which is where the pictures are taken. You will be asked to lie very still without any movement.  As long as the doctor doesn’t need anymore information, you are free to leave after the scan.  You can eat or drink your normal diet after the scan. Be sure to drink plenty of fluids to flush any remaining FDG out of your system. FDG doesn’t stay in your system very long, so there is no reason to stay away from other people once your study is complete. However, just to be safe, wait for a few hours before getting too close to an infant or anyone who is pregnant.  Our Nuclear Medicine doctors will then interpret the images and notify your doctor of the findings.  The radiation you receive from a PET/CT scan is almost equal to what you would receive from other imaging exams.  If you need to speak with a technician, the number for the PET/CT Center is (501) 526-5608.  If you need to cancel, please contact your clinic at (501) 686-8230. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 1/13 myeloma.uams.edu Ι 36 PET Scan Questionnaire (For Oncology Patients) Your doctor has asked us to do a PET (Positron Emission Tomography) scan for you. A PET scan is a procedure used to look at the body for signs of cancer. A PET scan is very safe. You will be given an injection of a liquid organic substance (dye). This liquid (dye) will travel to a specific organ or body part and will show what is happening there. There is no risk to you from the dye used in this type of test because it is made from the same things that are found in your body such as sugar, amino acids and water. Most other tests or scans take pictures of how an organ or body part looks. PET scans take pictures of how the same organ or part works. Both types of information are needed for the best possible care. To get the best PET scan possible, we need some information from you. Please complete the questions below. If you need help, ask the nurse or technologist to help you. 1. What type of cancer do you have? 2. Have you ever had a PET scan, CAT scan, MRI, X-rays or other scans done? (Check One) q YES q NO If you said YES, we will need the results to compare to this scan. 3. What kind of scan did you have? 4. Date of scan Where was your scan done? 5. Date of your next doctor’s appointment to get the results of this scan? 6. Other information that might help us with your care? Thank you for taking the time to complete this form. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 37 myeloma.uams.edu Ι 38 GuidetotoBone BoneMarrow Marrow Guide Aspirationand andBiopsy Biopsy Aspiration (MIRT) (MIRT) What is a Bone Marrow Aspiration? What is a Bone Marrow Aspiration? Bone marrow aspiration is a procedure in which a needle is placed through the bone into the marrow Bone marrow aspiration is a procedure in which a needle is placed through the bone into the marrow cavity within the bone and a small amount of marrow is aspirated (withdrawn) through the needle. cavity within the bone and a small amount of marrow is aspirated (withdrawn) through the needle. What is a Bone Marrow Biopsy? What is a Bone Marrow Biopsy? Bone marrow biopsy is a procedure in which a hollow needle is inserted through the bone into the Bone marrow biopsy is a procedure in which a hollow needle is inserted through the bone into the marrow cavity. Because the needle is hollow, a small piece of bone is captured in the needle as it passes marrow cavity. Because the needle is hollow, a small piece of bone is captured in the needle as it passes from the outside of the bone into the marrow cavity. When the needle is withdrawn, the small piece of from the outside of the bone into the marrow cavity. When the needle is withdrawn, the small piece of bone is retained in the needle. bone is retained in the needle. Bone marrow biopsy does not leave a permanent hole in your bone. Cells in your body immediately Bone marrow biopsy does not leave a permanent hole in your bone. Cells in your body immediately begin to fill in the area with new bone. begin to fill in the area with new bone. Why is a Bone Marrow Procedure Done? Why is a Bone Marrow Procedure Done? Bone marrow aspiration and/or biopsy may be done for diagnostic or therapeutic reasons. Diagnostically, it Bone marrow aspiration and/or biopsy may be done for diagnostic or therapeutic reasons. Diagnostically, it may be used to aid in evaluation of disease status. It may be used therapeutically to gauge treatment progress. may be used to aid in evaluation of disease status. It may be used therapeutically to gauge treatment progress. Where is the Procedure Performed? Where is the Procedure Performed? Bone marrow aspiration/biopsy is usually done in a special procedure room or at the patient’s bedside. Bone marrow aspiration/biopsy is usually done in a special procedure room or at the patient’s bedside. Who Will Do the Procedure? Who Will Do the Procedure? Specially trained nurse practitioners (APRN), physician assistants (PA) or doctors. Specially trained nurse practitioners (APRN), physician assistants (PA) or doctors. Is There Any Preparation for Bone Marrow Aspiration and Biopsy? Is There Any Preparation for Bone Marrow Aspiration and Biopsy? 1. If you feel you need additional medication for pain or anxiety, you will need to: 1. If you feel you need additional medication for pain or anxiety, you will need to:  Call the clinic the week prior to the procedure to arrange for a prescription.  Call the clinic the week prior to the procedure to arrange for a prescription.  Arrive 30 minutes early for the procedure and let the front desk know you will be taking a “pre-med.”  Arrive 30 minutes early for the procedure and let the front desk know you will be taking a “pre-med.”  If you will be awake for the procedure and are taking a pre-med, eat a small snack beforehand  If you will be awake for the procedure and are taking a pre-med, eat a small snack beforehand because the pre-med may upset your stomach. because the pre-med may upset your stomach.  If you are having a bone marrow aspiration and biopsy under sedation, you cannot eat for 8  If you are having a bone marrow aspiration and biopsy under sedation, you cannot eat for 8 hours beforehand. hours beforehand. REMEMBER: If your PET scan is scheduled later the same day, you cannot eat for six hours before REMEMBER: If your PET scan is scheduled later the same day, you cannot eat for six hours before the PET scan. (We normally try to avoid this when scheduling these tests.) the PET scan. (We normally try to avoid this when scheduling these tests.) DO NOT take Coumadin, Arixtra, Fragmin, Plavix, or aspirin within the last three days before the DO NOT take Coumadin, Arixtra, Fragmin, Plavix, or aspirin within the last three days before the procedure. You MUST make arrangements with your doctor to stop all “blood thinners” at least three procedure. You MUST make arrangements with your doctor to stop all “blood thinners” at least three days before the procedure OR switch to Lovenox. Lovenox may be taken up to one day before (but not days before the procedure OR switch to Lovenox. Lovenox may be taken up to one day before (but not the day of) the procedure. the day of) the procedure. If you have questions about these instructions, please contact your Phone Nurse at least one week If you have questions about these instructions, please contact your Phone Nurse at least one week before your scheduled visit at 1-877-635-7240 or (501) 686-8230. before your scheduled visit at 1-877-635-7240 or (501) 686-8230. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES UNIVERSITY ARKANSAS MEDICAL SCIENCES 4301 West OF Markham Street FOR - Little Rock, Arkansas 72205 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 39 Aspiration & Biopsy, continued (Page 2 of 3) Is There Any Preparation for Bone Marrow Aspiration and Biopsy? cont. 2. Lab work is necessary before the procedure. This must be drawn 3 - 48 hours before the procedure. (A CBC is required of all patients, and an INR is required of those who are taking “blood-thinners.”) 3. Bring the Requisition with you. You may have more than one. 4. If your dressing becomes soaked with blood, please return to the Bone Marrow Procurement clinic for it to be changed (Infusion 4 after hours). 5. The clear dressing stays on 4 days. The bulky pressure dressing only stays for 4 hours. It is very important for the area to stay clean and dry. 6. It is normal to feel some soreness after the procedure. This will improve over the next few days. The period of discomfort may be shortened by walking or performing leg lifts shortly after the procedure. 7. If you take blood pressure medicine, be sure to take it as scheduled before the procedure. 8. Music may help you to relax during the procedure, so feel free to bring your device with you. How is the Procedure Done? The procedure is preferably done on the back of the hip bone (posterior iliac spine), although it may be done on the front of the hip bone (anterior iliac spine) or on the breast bone (sternum). You will be asked to lie on your stomach on an examination table or bed. If this presents a major problem for you or if you have had radiation therapy to the pelvic area, please let the medical professional know and an alternate position may be arranged. Once in the designated position, lie as still as possible. The area is washed with an antiseptic (germkilling) solution and a sterile (germ-free) field is established, using a sterile sheet. It is very important that you do not touch this sterile sheet or the area prepared on your skin. This sterile area has been set up to aid in the prevention of infection. The next step is to anesthetize (numb) the area with an injection, much like the dentist does. The injection may burn initially, but only for a few seconds. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 40 Aspiration & Biopsy, continued (Page 3 of 3) How is the Procedure Done? cont. To perform a bone marrow biopsy, a small incision is made through the skin at the point where the aspiration needle was inserted. This is done because the tip of the biopsy needle is flat and the needle would not slip easily through the skin without removing part of the skin. The needle is inserted through the incision and through the bone into the marrow cavity. You may feel a pressure sensation as the needle goes through the bone. Since the needle is hollow, a piece of bone is captured in the needle. The needle is then removed. The biopsy is complete. The aspirating needle is inserted through the skin and bone and into the marrow cavity. Because the bone is hard you may feel some pressure as the needle goes through the bone. Once the needle is positioned, the medical professional will attach a syringe to it and then pull back on the syringe, creating suction. You may feel pressure again at this point. When sufficient material is obtained for laboratory analysis, the needle is removed. The aspiration is finished. The site is covered with a dry sterile dressing. A pressure dressing is placed over the sterile dressing. You will be asked to either lie on your back or sit in a chair and apply pressure to the area for ten minutes. The pressure dressing remains on for at least four hours. This helps to prevent bleeding under the skin and cuts down on soreness later. Walking will also help reduce soreness. You will be asked to leave the sterile dressing on and keep it dry for four days. This is done to prevent infection. When Will I Know the Results? There are several different tests that can be performed on each specimen. The time required for your doctor to receive results will vary from four hours to 48 hours, depending on the tests ordered. Your doctor will talk with you and your family after receiving test results. Will My Insurance Cover This Procedure? Most health insurance companies cover bone marrow aspiration and biopsy. The amount of coverage will differ from one insurance company to another. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 6/14 myeloma.uams.edu Ι 41 ! IMPORTANT REMINDER TO ALL PATIENTS SCHEDULED FOR BONE MARROW BIOPSY You WILL NOT receive a bone marrow biopsy if you have taken Coumadin, Plavix or aspirin within the last thee days prior to your scheduled test. You MUST STOP all anticoagulation drugs thee days before your visit. The exception is Lovenox which can be taken up to one day before (but not on the day of) the procedure. If your local physician is advising you not to stop the medication, he may opt to switch you to Lovenox three days prior to the procedure. If you have any difficulties with these instructions, please call the Phone Nurse to discuss this on week before your return visit: 1-877-635-7240 or (501) 686-8230 myeloma.uams.edu Ι 42 Infusion 4 The staff of Infusion 4 will be administering your chemotherapy and helping you recover. We want your experience here to be as pleasant as possible for you and your family. There are several things that you need to know that will help you during your stay with us. 1. Please arrive at your appointment time, unless you are ill. If you are ill or have a fever (greater than 101), please call (501) 686-8220 and select Option #5 as early as 7:00 a.m. and let us know so you can be seen earlier in the day. 2. Always be sure the nurse has given you appointments and that you check out at the front desk to confirm you have an appointment for the next day. 3. If you have been waiting longer than 30 minutes after you check in, please check with the front desk to be sure your paperwork has been received. 4. If you are assigned to an APRN (Advanced Practice Registered Nurse), she will see you every other day unless you are ill, in which case may be seen daily. Please be sure you ask your APRN for any medications or medication refills you may need while you are a patient in Infusion 4. 5. It is important that you attend CVL (central venous line) class as soon as possible. This class, held on the first floor of the hospital, is necessary to help you learn how to flush and care for your line and how to use home infusers to deliver antibiotics and electrolyte replacements. 6. If you have questions about your care or treatments, please let someone at the front desk know when you check in that you would like to speak to the triage nurse. Our staff is committed to helping you through your treatment and recovery. Please do not hesitate to ask if you are unsure about anything. Thank You, Infusion 4 Staff myeloma.uams.edu Ι 43 Instructions After High Dose Chemotherapy - MIRT Following your treatment with high dose chemotherapy, you will be discharged to either home or a place of residence in the local area. The chemotherapy will cause your blood counts to go down to very low levels. Therefore, it is important for you to follow these instructions. General Hygiene: 1. Remember to wash your hands before eating and after using the bathroom. 2. Bathing daily will help you feel refreshed. If you have a central venous catheter, please do not get it wet. 3. Avoid people with any symptoms of colds, flu, infections, chicken pox (or those who have been exposed to chicken pox) and shingles. 4. Take good care of your mouth. Brush your teeth in the morning, after every meal or snack and before you go to bed. Rinse your mouth with the prescribed mouthwash after every brushing and more often if your mouth is sore. Use a soft toothbrush to brush your teeth. 5. Drink plenty of liquids, about 8-12 glasses (8 oz.) of fluid a day. Combating the Side Effects: 1. If you have nausea or vomiting that keeps you from drinking enough fluids or eating an average amount of food in a day, tell your doctor or nurse. You may need to have extra fluids given in the Cancer Institute intravenously. 2. Take your temperature by mouth every morning and evening and anytime you feel like you may have a fever. 3. Do not take acetaminophen (Tylenol), aspirin, ibuprofen or any medicine that contains these drugs unless specifically told to take them by a doctor or nurse. 4. Take all of the medications prescribed by your doctor. Keep a record of the medications that you are taking and keep this list with you at all times. 5. When your white blood count is low, please avoid crowded places such as shopping malls, restaurants, etc. Wear a mask when you are around people (other than those who stay with you), when you go outdoors, run errands or even go to the clinic. 6. Let your doctor or nurse know if you have chills, sore throat, cough, shortness of breath, bleeding from the nose or mouth, blood in the urine or stool, frequent or loose stools, constipation, rash or bruises, red or painful IV catheter site. 7. During the time when your white blood count is low, have someone else take care of your household pets and/or large animals such as horses or other farm animals. This includes the care of cages, litter boxes, stalls, etc. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 44 After High Dose Chemotherapy continued (Page 2 of 2) Patient Information: Do not take aspirin. You may take acetaminophen (Tylenol) for pain but NOT for fever. Call for any of the following: 1. 2. 3. 4. 5. 6. Fever over 101° (Call immediately. Do not take Tylenol.). Weakness - so tired that you cannot do daily activities. Shortness of Breath with normal activities. Blood in urine, stool, sputum, or for change in bowel habits. Uncontrolled nausea, vomiting, or diarrhea. Any Questions or other problems. Remember: Institute to have blood counts checked a regRemember:You Youwill willneed needtotocome cometotothe theMyeloma MIRT Clinic to have youryour blood counts checked on aon regular ular schedule. You willbebeassigned assigned aa primary primary nurse will telltell youyou the the daysdays and schedule. You will nurse in in the the outpatient outpatientclinic. clinic.He/she He/she will times to return. and times to return. Your nurse at the clinic is ______________________________________. Hours: Monday-Friday Institute (501) 686-8530 Monday-Friday8:00 8:00a.m. a.m.- -5:00 5:00p.m. p.m.Call CallthetheMyeloma MIRT Clinic (501) 686-8530 andand askask to to speak to one of the Oncology nurses. speak to one of the Oncology nurses. Monday-Friday callcall thethe Hospital Operator at Monday-Friday5:00 5:00p.m. p.m.- -8:00 8:00a.m., a.m.,Weekends Weekendsand andHolidays Holidays Medicine Referral (501)686-5000 and ask for the Myeloma Institute physician on call. He or she will connect and Appointment Office at (501) 686-7911 and ask for the Oncology physician on call. you. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 45 Common Side Effects of Chemotherapy Managing Common Side Effects of Chemotherapy Chemotherapy is not smart and does not just kill malignant cells. Chemotherapy will kill any rapidly dividing cell. If you look at your body from head to toe you can map out the systems that will be affected by the chemotherapy. Your hair, digestive system, and bone marrow all reproduce at a very rapid rate. Most chemotherapy side effects center on these systems. These side effects include partial to complete hair loss, nausea, throwing up, diarrhea and the loss of production of blood cells in the bone marrow. Lack of white blood cells can lead to serious infections. Loss of red cells can lead to severe anemia. Loss of platelets can cause you to bleed longer and bruise more easily. Below is further information about the side effects. Side Effects Involving the Bone Marrow ANEMIA A decrease in the number of red blood cells is called anemia. The red cells carry oxygen from the lungs to the major organs of the body. When there is a decrease in red cells there is also a decrease in circulating oxygen, which can lead to extreme fatigue and shortness of breath. Please follow these guidelines: 1. Contact your doctor, APRN or nurse if you notice an increase in fatigue with or without shortness of breath. 2. Unless you have a cardiac condition or are volume depleted, you will receive blood if your hemoglobin falls below 8.0. 3. Please do not be alarmed if you need blood or blood products. It is important that we maintain a good circulating volume. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 46 Chemo Side Effects, continued (Page 2 of 8) LOW PLATELET COUNT A decrease in the number of platelet cells is called thrombocytopenia. The platelets cause your blood to clot. When there is a decrease in platelets, you may bleed longer if you cut or injure yourself and you will bruise more easily. Please follow these guidelines: 1. Contact your doctor, APRN or nurse if you notice any bleeding or increase in bruising. 2. Be sure to let us know if you fall when your platelets are low, so that you can be evaluated. 3. Use a soft tooth brush when brushing your teeth. 4. Be careful when shaving not to cut yourself. Use a safety razor. 5. If your platelet count is less than 20,000 we will often give you platelets. For some patients, this number may be lower or higher depending on your medicines or pre-existing medical conditions. INFECTION A decrease in the number of white blood cells is called neutropenia. When you are neutropenic, it IF YOU HAVE A FEVER OF 101 OR HIGHER, CALL THE INFUSION CENTER OR YOUR DOCTOR RIGHT AWAY. If you spike a fever of greater than 101, please take 2 regular strength Acetaminophen. You can use the Acetaminophen every 6 hours for fever greater than 101, until you are seen, evaluated and started on an antibiotic. Please follow these guidelines (you and your caregiver): 1. Wash your hands very well and often. You should always wash your hands before eating and after using the bathroom. 2. Wear a mask at all times once you become neutropenic until your counts have fully recovered. 3. Avoid children and people who are ill. 4. Avoid anyone who has had recent immunizations. Check with your doctor or APN before getting immunized yourself. 5. Stay away from large crowds and enclosed spaces. 6. Do not touch pet feces. 7. Use a water-based lubricant during sex, and wash well after having sexual relations. A form of barrier protection such as condom should be used. 8. Wash and cook food thoroughly. 9. Limit how much you are exposed to outdoor pathogens. Avoid activities like gardening and outdoor sports. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 47 Chemo Side Effects, continued (Page 3 of 8) Side Effects Involving the Gastrointestinal Tract MUCOSITIS Mucositis is the inflammation of your mucous membranes. These are the tissues that line your digestive system all the way from your mouth, esophagus, stomach, intestines, and rectum to your anus. The cells of the mucous membranes divide very quickly and can become sore and begin to slough away when chemotherapy is given. It is a common side effect of certain types of chemotherapy used in your therapy. We advise that you use a toothpaste and alcohol-free mouthwash before, during and after therapy. This contains enzymes to reduce bacteria, gum irritation and dry mouth. Please ask you nurse to supply you with some mouthwash. If you notice that your mouth is sore or has lesions appear, please follow these guidelines: 1. Report new mouth sores to the doctor or nurse. 2. Clean mouth often and use an anesthetic mouth rinse before eating. 3. Avoid foods that are acidic, spicy, or hot. Also avoid foods that are coarse or dry. 4. Try frozen popsicles or other frozen foods to help decrease pain. 5. Try soft foods that are easy to swallow. 6. Moisten foods with liquid to soften. 7. Brush your teeth and floss gently. Use a soft toothbrush and fluoride. 8. Rinse your mouth with a mixture of half a teaspoon of baking soda and a half a teaspoon of salt in a pint of water. Be sure to re-make the mixture every 48 hours. 9. Remove dentures. 10. Eat foods that require little or no chewing. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 48 Chemo Side Effects, continued (Page 4 of 8) DIARRHEA bacteria that lives in the GI tract can be destroyed and cause the bowel to be irritable. These same bacteria that we live with every day can also make you sick when you become neutropenic. It is vital that you purchase some over-the-counter Imodium and have it on hand at all times. If you begin to have diarrhea, please follow these guidelines: 1. Take one Imodium tablet every 2 hours until seen by your doctor or APRN. 2. Eat smaller amounts of food, but eat more often. 3. Try the BRAT Diet; Bananas, Rice, Applesauce, and Toast. 4. 5. Avoid coffee, tea, alcohol, and sweets. 6. Avoid milk and milk products if they make your diarrhea worse. 7. Eat potassium-rich foods such as bananas, oranges, potatoes, peaches, apricots and nectarines, unless your doctor has told you otherwise. 8. LOSS OF APPETITE Many patients going through chemotherapy have a loss of appetite due to the changes in the GI tract and the taste changes that go along with chemotherapy. If you notice changes in taste, please follow these guidelines: 1. away your appetite. So while your meal is being prepared, try to stay away from the kitchen. Extra portions can be placed in the freezer. 2. Consume at least a third of daily calories for breakfast. Your appetite will tend to be better in the morning and often goes away as the day goes on. 3. Try small, frequent meals instead of large meals. Just looking at a large meal can make your appetite go away. 4. Have high-calorie, high-protein snacks on hand. 5. Light exercise (5-10 minutes) about 1/2 hour before eating may help make you more hungry. 6. Create a fun, pleasant place for eating. 7. Make eating a social event. 8. Add powdered milk to foods to increase protein content. 9. Work with your doctor, nurse, and dietitian to learn other ways to improve appetite. When foods do not taste right, please follow these guidelines: 1. 2. Increase liquids like water, club soda, or fruit juices to remove some unusual tastes. 3. Try sucking on hard candies or chewing sugar-free gum to decrease bitter or metallic tastes. s best for you. 4. 5. 6. Add some lemon juice to your water to make it taste better. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 49 Chemo Side Effects, continued (Page 5 of 8) NAUSEA AND VOMITING Be sure to tell your doctor or nurse if you are very nauseated, have been vomiting for more than a day, or can’t keep liquids down. Fortunately, nausea and vomiting can almost always be lessened by taking antinausea drugs and following tips like these: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. Salty foods may decrease nausea. Avoid heavy, creamy, spicy or fried foods. Try bland, low-fat foods. Loosen clothes, get some fresh air and sit upright for 1/2 hour after eating. Try small, frequent meals rather than large meals. If you know when you may have nausea or vomit, avoid favorite foods at this time. Report nausea or vomiting that does not go away to the doctor, APRN or nurse. Avoid eating for at least a few hours before chemotherapy if nausea usually occurs during treatment. Stay away from sweet, fried, and fatty foods. Chew food well for easier digestion. Suck on ice cubes, mints, or tart candies. Avoid candy if you have mouth sores. Try to avoid odors that bother you, such as cooking smells, smoke, and perfume. Rest in a chair after eating. Breath deeply and slowly when you feel nauseated, and use relaxation techniques such as listening to soft music. NUTRITIONAL INFORMATION AND TIPS Chemotherapy destroys any quickly dividing cells in your body, not just cancer cells. As these cells die, they are pushed through the blood stream to the kidneys where they will be made ready for removal kidneys remove the waste products during and after chemotherapy, and help prevent dehydration. You feine. Any product that melts at room temperature, such as ice cream, popsicles or gelatin, is considered to be , you need to let us know so we can determine if intravenous hydration is needed. You also need to increase the amount of protein you are eating during treatment. Protein is needed by the body to rebuild the normal cells that are being destroyed by the chemotherapy. You can increase your protein by eating any type of meat, seafood, eggs and diary products, legumes, whole grains and nuts. If you do not feel like eating very much, you can still increase the protein in eggs or potatoes by adding some cheese. Keep high protein foods such as nuts open in the house so you can grab handful as you go by. You can create a complete protein by mixing beans and rice together. Keep instant breakfast or nutrition drinks in the house and use them between meals to increase your protein and calories. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 50 Chemo Side Effects, continued (Page 6 of 8) Side Effects Involving the Nervous System CHEMO INDUCED PERIPHERAL NEUROPATHY Disorders of peripheral nerves are frequent complications of chemotherapy and certain other drug therapies. Chemotherapy drugs such as Velcade can cause degeneration of peripheral sensory and motor nerves and cause you to have a tingling or burning sensation in your hands and feet, balance problems or weakness. Symptoms Symptoms are related to which nerve endings are affected. If sensory nerves are involved you may have: 1. Unusual sensations (paresthesias) 2. Numbness in hands and feet 3. Balance problems 4. Pain In cases where the motor nerves are affected, you may have: 1. Weakness of the muscles in the feet and hands. If you have any of these symptoms please be sure to tell your APRN, nurse or doctor right away. Treatment Treatment of peripheral neuropathy may depend on many factors and may include: 1. Use of pain medications 2. 3. Referral to a Pain Management Specialist 4. Reduction of the chemotherapy dose This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 51 Chemo Side Effects, continued (Page 7 of 8) PAIN Multiple myeloma causes a thinning of the bones. This can lead to degeneration which can cause pain. About 70 to 80 percent of patients with multiple myeloma report that they have pain due to the disease. Back pain is the most common site of reported pain, but pain can occur anywhere there are myeloma lesions. Symptoms 1. Worsening of pain or change in its character or location. Most bone pain begins inside the bone and causes a dull, aching pain. 2. Chronic back and/or rib pain may be a sign that your disease is getting worse. As the tumor lesion expands it invades the periosteum of the bone. This is a sensitive, nerve-rich membrane that covers the bone. Invasion of this portion of the bone can cause a burning sensation and shooting pains along the nerve track. 3. A rapid increase of your pain or pain with muscle weakness may be a sign of a fracture or compression of the spinal cord. A rapid increase in your pain should be reported right away as these may be urgent conditions that will need to addressed. Treatment 1. The most successful treatment for pain due to multiple myeloma is treatment of the disease with chemotherapy. 2. Most pain can also be treated with narcotic pain medicines before and during your treatment. If your pain does not go away on the current pain medicines you are taking, please let us know right away so we can try other drugs or combinations of drugs to resolve your pain. 3. Another group of drugs called bisphosphonates are now used to treat the pain caused from multiple myeloma. These drugs are Aredia and Zometa and can halt the progression of bone lesions in myeloma and other cancers. By stopping the growth of lesions, these agents also provide pain relief. These drugs are given through the vein on a monthly basis. Unlike pain medications, bisphosphonates may take some time before they provide pain relief so do not stop taking your pain medications if you start Aredia or Zometa. You may need treatment with both forms of medication until your pain is fully controlled. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 52 Chemo Side Effects, continued (Page 8 of 8) Side Effects Involving the Cardiac System ELECTROLYTE REPLACEMENT Side effects of high dose chemotherapy such as the nausea, vomiting, mucositis, changes in taste lack of appetite, diarrhea and even the chemotherapeutic drugs themselves can lead to dehydration and loss of vital electrolytes such as potassium and magnesium. Replacing lost electrolytes common and you should not be alarmed if you need to have intravenous and/or oral electrolyte replacement on a routine basis. Dehydration is very common and can lead to dizziness, weakness and loss of consciousness due to a drop in blood pressure. We will take your blood pressure sitting and standing each day. If there is a large drop in your blood pressure between sitting and standing or if your sitting blood pressure is very low, Chemotherapy Side Effect You Need to Report to Your Nurse Report cough, shortness of breath and degree of congestion. Report degree of alopecia. Report sore throat, sores in mouth, sore gums, problems swallowing, pain when eating hot or cold foods or pain in chest. Report nausea and vomiting and how many episodes in last 24 hours. Report presence of diarrhea and the number of stools in 24 hours. Report any signs of urinary tract infection. Be sure your nurse checks your most recent labs prior to any treatment. CHECK: white blood count, platelets, hemoglobin, creatinine, liver function tests, electrolytes and CRP. REPORT: increases in creatinine, phosphorus, uric acid, abnormal electrolytes and CRP. Report any complaints of peripheral neuropathy. Please use the chart above to report any adverse side effects to your nurse or APRN on a daily basis. If you are having problems not listed above, please be sure to tell your nurse or APRN. Please feel free to talk to us about any issues that you are concerned about. Please know that our main goal is to help you through your bone marrow transplant with as few side effects as possible. We are only able to achieve this goal if you let the health care team know about any changes in how you feel. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 7/11 Reviewed 11/14 myeloma.uams.edu Ι 53 Peripheral Blood Stem Cell Collection and Transplantation Different Kinds of Transplants • Autologous Transplant - patient receives his/her own peripheral blood stem cells after undergoing high dose chemotherapy • Allogeneic Transplant – patient receives peripheral blood stem cells from a related donor after undergoing high dose chemotherapy. • Matched Unrelated Donor (MUD) Transplant – patient receives peripheral blood stem cells from an unrelated donor. The donor is located through the National Bone Marrow Donor Program (NMDP) or one of the other national/international registries that collectively have more than 2.5 million volunteer donors whose stem cells have been “typed.” Note: The transplant in and of itself does not kill cancer cells. The transplant serves as a “rescue” by promoting rapid recovery of bone marrow following high dose chemotherapy. It is the high dose chemotherapy that kills the cancer cells. Transplant can be very effective in the treatment of Multiple Myeloma, as well as Hodgkin Disease, Non-Hodgkin Lymphoma, Acute Leukemia, Chronic Leukemia, Aplastic Anemia and Myelodysplastic Syndrome. Bone Marrow Transplant (BMT) versus Peripheral Blood Stem Cell Transplant (PBSCT) Bone marrow is a spongy-type tissue found in the bone cavity. Bone marrow produces stem cells which multiply and differentiate to become red blood cells (which carry oxygen to body tissues), white blood cells (which fight off infection) and platelets (which assist the blood in clotting). All blood cells originate from stem cells. Bone marrow is harvested from the patient’s/donor’s hipbone. Peripheral blood stem cells are extracted from circulating peripheral blood after the patient/donor has been treated with a growth factor called Granulocyte Colony Stimulating Factor (G-CSF) or chemotherapy. G-CSF stimulates the bone marrow to produce excess quantities of stem cells in the bone marrow. Chemotherapy causes a drop in blood cell counts, for which the body compensates by increasing production of stem cells in the bone marrow. Excess stem cells are then released into the circulating blood. The number of peripheral blood stem cells can be increased tenfold through the use of growth factors and/or chemotherapy. When the stem cell count in the circulating blood is high enough, the cells are collected through a process called apheresis, and are then processed and frozen until needed. Peripheral blood stem cell transplant provides more rapid recovery of white blood cells and platelets following high dose chemotherapy than bone marrow transplants. This means an overall faster recovery for the patient with reduced need for supplemental blood products such as red cells and platelets. Also, there are typically fewer cancer cells among circulating blood stem cells than among bone marrow stem cells. The majority of transplants performed at the Myeloma Institute are peripheral blood stem cell transplants. myeloma.uams.edu Ι 54 Allogeneic and MUD Transplants–Suitable Donor Cells Anyone whose blood antigens match yours and who is in good health can be a potential donor. All cells have on their surface certain structures called human leukocyte antigens, or HLAs. These structures have the capability of recognizing whether cells belong to your body or whether they are foreign. If your antigens match those of the potential donor, there is a decreased likelihood that the “foreign” cells will be rejected. Once the antigen match is established, the potential donor must undergo several tests to determine overall health. The tests evaluate different body systems, such as cardiac, pulmonary and renal. Note: The closer the antigen match, the greater the likelihood that the donated cells will be accepted. It is important to realize, however, that even with close HLA matches, subtle differences on the surface of the cell membrane may cause Graftvs.-Host Disease (GVHD), a condition in which the patient’s immune system reacts against the donor cells. There are several drugs available to prevent and/or treat GVHD. The medications make it possible for some less than perfect matches to be successful. Preparation for Stem Cell Collection Chemotherapy and/or growth factors may be administered to enhance the body’s production of circulating peripheral blood stem cells. If you receive chemotherapy, stem cell collections will begin just as your blood counts start to recover. Because the time during which increased production of peripheral blood stem cells occurs is limited, and because the first days of collections are the most important, you will need to stay in Little Rock for blood work assessments. You should plan on staying in Little Rock for three to six weeks for the entire peripheral blood stem cell collection process. If you receive growth factor only, you will receive daily injections and you should plan on a two-week stay. Collection of Cells–Apheresis Peripheral blood stem cells are collected through a process called apheresis. A blood cell separator machine draws blood from your body, separates the different blood cells, stores the stem cells and then returns the rest of the blood cells back to you. The machine operates a very rapid withdrawal and return of your blood, necessitating a special catheter placed in your chest by a surgeon several days prior to the start of the collection process. The catheter is larger and stiffer than what you may have experienced in the past. Talk to your physician or nurse about pain medication (not containing aspirin or ibuprofen) that you can take for any associated discomfort. myeloma.uams.edu Ι 55 Side Effects of Collection A solution that thins your blood and keeps it from clotting will be added to your blood as it enters the apheresis machine. This solution can cause a decrease in your calcium level, which in turn may cause mild side effects, such as tingling around your lips, face and fingers. You may also feel cold, anxious or tense. Eating high calcium foods, such as milk and ice cream, may help alleviate these side effects. You will be given a calcium supplement during each procedure. Any side effects you may experience should pass quickly after the procedure has been completed each day. However, most patients do complain of feeling tired and worn out after their daily stem cell collection. Multiple Collection Procedures Lasting up to Four Hours The number of stem cell apheresis procedures for sufficient collection is different for each person. The procedures are performed Monday through Friday and sometimes on Saturday. You will be informed on the Friday before if you will need to come in on Saturday. Each stem cell apheresis procedure lasts from three to four hours. You will be awake during the procedures, so bring reading material or something to help pass the time. It is helpful if you wear a button-down or V-neck shirt so that the staff can more easily access your catheter. Where and When Does Apheresis Take Place? The Cell Therapy–Apheresis Unit is located in the E Wing (Ward Tower) - Room 1E/30, across the hall from Hospital Admissions. Collection usually begins at 7:00 am with lab draws and injections; the collection itself begins an hour after administered injections. Storage of Cells After Collection Your stem cells will be taken to the Cell Therapy Processing Lab where they are frozen and stored until you have your stem cell transplant. Hours of Operation 7:00 a.m. to 5:30 p.m. (Monday - Friday) 7:00 a.m. to Noon (Saturday) Please note that the Cell Therapy–Apheresis Unit is closed on Independence Day (July 4), Thanksgiving and the day after, Christmas day, and New Year’s Day. The Apheresis staff can be reached at (501) 686-8210, should you have any questions. myeloma.uams.edu Ι 56 Apheresis Collections/Procedures 1. Procount testing will begin when your WBC is greater than 2.0 after receiving chemotherapy. If you are using growth factors only for mobilization, you will begin your Procounts after receiving the shots for five days. 2. Please report each morning to Apheresis, Room 1E/30 in the Ward Tower, between 7:00 a.m. – 8:00 a.m., Monday – Friday for lab and growth factor shots. The Procounts are run in batches by the lab and they must have them by 8:00 a.m. in order to have them completed in a timely manner. Results will be ready after 12:00 p.m. at (501) 686-8210. 3. Your afternoon growth factor shots will be given in Infusion 4. 4. For parking, you may use Parking 1. Parking is validated by CTA. 5. You can expect to be here for four to five hours for stem cell collection and two to three hours for therapeutic procedures. 6. You may eat and drink during your procedure. Please feel free to bring food. „„You may want to increase your intake of foods rich in potassium, magnesium and phosphorus. Nutrition lists are available upon request. „„Please limit your caffeine intake to prevent too many interruptions during the procedure. „„You will receive about one liter of fluid during your procedure. 7. All rooms have a TV with remote control and basic cable channels. You may bring books, magazines, and portable CD/DVD players. 8. Once you begin your stem cell collection you may expect to be here 2–6 days. You will have to collect for a minimum of 2 days, but could have to come for up to 6 total days. „„As a general rule, you will collect every morning until discharged. However, for various reasons, you may collect every other day or in the afternoons. Your plan may be different. We want to develop the best plan for you in order to optimize your collection. „„Therapeutic procedures are performed as prescribed by your doctor and the apheresis medical director. 9. It is helpful to wear button down shirts or tank tops under your shirt in order to help access your CVL (we utilize a Quinton catheter). 10. It is recommended that you attend CVL Care class if you haven’t already done so. Classes are available Monday - Friday at 12:30 p.m. (Room 1E/34 in the Central Building - next door to Apheresis). 11. We request a current list of all medications you are taking. Please tell the staff if you are taking Lovenox, thalidomide, antibiotics, antivirals, or antifungals. Some of your medicine may need to be changed or stopped. 12. If If you your APRN 12. you need need aa refill refillon of one oneof ofyour yourprescriptions, prescriptions,please pleaseseesee your APNororprimary primarycare caredoctor. doctor. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 10/15 myeloma.uams.edu Ι 57 Stem Cell Transplantation Prior to the transplant process, you will undergo several tests to ensure that you are ready to proceed. This will take about three days, and once these have been accomplished, it is time for treatment. If you will be undergoing an autologous stem cell transplant, a decision will need to be made on whether or not you will have your treatment as an outpatient, or in the hospital. Some of the factors that go into making this decision include overall health condition, if you have a caregiver with you, possible insurance restrictions, and renal function. It will be important to discuss this issue with your physician. In order to prepare your body for transplant, you will receive high dose chemotherapy with or without radiation therapy. This is called the “conditioning regimen.” There are three functions of the conditioning regimen. First and foremost is the purpose of destroying the cancer cells. By using high doses of chemotherapy, more cancer cells can be destroyed. Secondly, cells in your bone marrow at the time of treatment will be destroyed, thereby leaving “clean soil” for the new, infused stem cells to grow. The day of transplant will be anywhere from 24 to 48 hours after the completion of the conditioning regimen. We refer to this day as “day 0,” with each subsequent day being, “day + 1,” “day + 2,” etc. Depending upon the number of cells and the volume, the procedure itself will take a minimum of 30 to 45 minutes, and potentially longer. If the volume of cells for you to receive is large, the infusion may be divided into two days. During the stem cell infusion, your vital signs will be monitored frequently and there will be an APRN or MD in the room with you until the infusion is completed. For those people receiving autologous cells, there will be a distinct odor to the cells and subsequently to your bodily excretions for the first 24 to 36 hours after the infusion. The smell is due to the preservative that is used in the storage process of autologous cells. Some patients state they can “taste” the preservative, so we recommend having some mints (peppermints, hard candies) available during the infusion. Also, do not be alarmed if the color of your urine is very red for 12-24 hours after the infusion of cells. This is a normal process and need not cause concern. Generally speaking, many of our patients tell us that the transplant process itself is very anticlimactic. After the Transplant Once the stem cells are infused, there is a waiting period in which the blood counts (white cells, red cells and platelets) will drop very low and then return to within normal limits. The term used to describe when the transplanted cells “take” and begin to grow in the bone marrow is called engraftment. Though everyone is different, the time between transplant and engraftment is generally between 10-16 days. It is during the time when your counts are low that you will most likely feel the worst; you may require transfusion of red blood cells and/or platelets as well. As you know, high-dose chemotherapy and/or radiation are not without side effects. We will do everything we can to prevent or minimize the potential side effects (such as nausea, vomiting, diarrhea, and mucositis or mouth sores). Your physician, APRN, RN or pharmacist can discuss what if any side effects you will most likely experience, and what we do to treat those problems. myeloma.uams.edu Ι 58 High dose chemotherapy and radiation can also lead to complications. Listed below are some of the potential conditions that could occur. They can be treated but have the potential to be life threatening. Your physician will discuss with you the possible complications of your particular therapy. Infection Because the treatment will wipe out the bone marrow, you will be at risk for infection. There are protective isolation measures that will be explained to you as you enter this phase of therapy. Since you will be at risk for infection, you will be placed on prophylactic or “preventive” antibacterial, antiviral and antifungal medications. During your neutropenic (very low white blood count) period, if you have a temperature of 101 degrees or greater, you will be placed on more potent intravenous medications. Heart, Kidney or Lung Problems The use of high dose chemotherapy drugs can possibly reduce the function of your heart, kidney or lungs. The testing done prior to transplant will serve as a baseline or guide of what your normal functions are in these areas, and they will be closely monitored throughout the course of your therapy. Lack of Engraftment On very rare occasions, the infused stem cells do not grow within the bone marrow. This is referred to as “lack of engraftment” or “graft failure.” Blood counts and bone marrow examinations monitor this condition. Should this problem persist, a second infusion of cells or a “boost” will be recommended. myeloma.uams.edu Ι 59 Discharge Instructions: Bone Marrow/PBSC Transplant Most people have many questions about activities and follow up care once they are discharged from the hospital following a transplant. We hope the following information will answer some of these questions. This information is intended to add to and support information given to you by your doctor or nurse. We know we cannot anticipate every question you will have and urge you to ask your doctor or nurse for any additional information you need. General Information Recovery of your blood counts to a level safe enough to prevent infections, bleeding and breathing problems is the criteria for discharge from the hospital. Each individual person is unique and recover their blood counts differently, some more slowly or rapidly than others. Leaving The Hospital Discharge from the hospital is planned to be approximately 10 to 15 days after an autologous transplant, 21 to 30 days after a transplant from a donor (allogeneic). However, if you have problems eating or drinking sufficient food or fluids, or if you have a fever, you may have to stay a few days longer. Discharge at this time is to the local area. This can be home if you live within a one hour drive from UAMS and have transportation to return immediately if you need to. Discharge can be to a local hotel, apartment or other temporary residence if you live outside of the Little Rock area. The length of stay in the Little Rock area will depend on how you feel and what your needs are once you are discharged from the hospital. A responsible adult will need to stay with you after discharge until you are able to care for yourself, take in sufficient fluids, eat a balanced diet and travel back and forth to the Cancer Institute on your own. The chemotherapy you will be given before your transplant is usually the cause of any problems you will have. The infusion of your cells through an intravenous catheter, the actual transplant, usually does not cause any side effects. Therefore, any side effects you have will be very much like the side effects you would have from chemotherapy at any other time. The instructions following a transplant are much the same as those following treatment with chemotherapy. Things to do and things not to do are presented on the following pages. If all of your questions are not answered here, please ask. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 60 Discharge Instructions, continued (Page 2 of 4) Things To Do Handwashing Hand washing is the most effective way to avoid infections. Wash your hands frequently, especially if you have been out in public places and particularly before and after using the bathroom and before eating. Use a liquid antibacterial soap. Take a bath or shower every day to reduce bacteria on the skin. If you have a central venous catheter in place, it must be kept dry. Ask a nurse to teach you how to wrap the catheter with plastic to keep it dry when you bathe. Mouth Care Clean your mouth frequently. Brush your teeth in the morning, after eating and before bed. Rinse your mouth each time you brush. Use an alcohol-free mouth wash. Use a soft tooth brush and do not floss if it causes bleeding. Food You can eat out, but do not eat from a salad bar. When eating out or at home, only eat cooked foods while your white cell count is low. Avoid unwashed vegetables and fruits. Do not eat raw meat or fish while your blood counts are low. Fluids Drinking a sufficient amount of fluids and eating a balanced diet is very important. Try to drink 8 - 10 glasses (8 oz.) of fluid a day. If nausea, vomiting or just inability to eat keep you from eating a balanced diet or drinking enough fluids, let your nurse or doctor know. Fluids or nutrition can be given intravenously at the clinic or by the home health nurses if necessary. Out and About Avoid crowded places. Go shopping, to church, restaurants, or movies at off times when fewer people are around. Wear a mask when you will be around people you do not know, including clinic visits. Avoid people with symptoms of flu, colds or other infections; anyone known to have had a recent case of shingles or exposure to chicken pox; and children recently immunized. Pets and Animals Have someone else take care of your household pets and/or other animals. This includes the care of cages, litter boxes, stalls, barns etc. Medication Take all of the medications prescribed by the doctor. Do not take acetaminophen (Tylenol), aspirin, ibuprofen or any medication containing these drugs unless you are told to take them by a doctor or nurse taking care of you. Keep with you a record of the medications you are taking. Do not use rectal suppositories or enemas when your blood counts are low. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 61 Discharge Instructions, continued (Page 3 of 4) Please Report If you just do not feel well or have any of the following problems let your doctor or nurse know:  Chills  Sore throat  Cough  Shortness of breath  Bleeding from the nose or teeth  Blood in urine or stool  Constipation  Rash or bruises  Unusual pain  Red or painful IV catheter site  Sweating  Fever Take your temperature by mouth every morning and evening and anytime you feel you may have a fever. A fever of 101 degrees or higher should be reported immediately. Frequently Asked Questions Alcohol in moderation may be permitted but should be discussed with your doctor. Moderate exercise on a daily basis is encouraged. Heavy exercise when blood counts are low could cause problems with bleeding and/or fatigue. Visiting areas that are potential sites of infection is discouraged. These include the zoo, animal shows, hiking trails, public swimming areas and construction sites. Generally, sexual function is not affected by chemotherapy treatments. However, some of the side effects of the chemotherapy drugs can temporarily cause changes. Nausea, vomiting, fatigue, etc., can cause a decreased desire or interest in sexual activities. Women may experience irregular menstrual periods, hot flashes or other menopausal symptoms. If needed, sanitary napkins rather than tampons are recommended. Platelet counts of 50,000 and Granulocyte counts of 1,000 are the usual guidelines for a safe resumption of sexual intercourse. A water-soluble lubricant (such as K-Y Jelly) is recommended to reduce friction. The genital area of both partners should be thoroughly cleansed before and after intercourse. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 62 Discharge Instructions, continued (Page 4 of 4) Pregnancy is not probable, but is possible, while receiving chemotherapy and during recovery from chemotherapy treatments. Pregnancy should be avoided at this time since the effects of the drugs could cause serious harm to a developing fetus. Birth control pills should not be taken unless specifically ordered by the doctor taking care of you. Other forms of birth control should be used until all effects of the chemotherapy drugs are over. If you have other questions about sexual activities, having children, or future family planning, discuss this with your doctor or nurse. Referrals for sperm banking, sexual counseling etc., can be provided. Please look at the discharge instructions/quick reference for helpful phone numbers you may need. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 63 Wash Your Hands The best thing you can do to keep from getting sick or spreading an illness is to Wash Your Hands! How should I wash my hands? „ Use soap and warm water „ Rub your hands together „ Scrub for at least 20 seconds What if I am away from soap and water? „ Use alcohol-based hand sanitizers „ Rub the sanitizer all over your hands „ Rub it under your nails and between your fingers „ Rub it in until your hands are dry When should I wash my hands? „ Before touching or eating food „ After you use the bathroom „ After you take out the trash „ After you change a diaper „ After you handle money „ After you play with a pet Make sure your doctor, nurse, dentist or other health care worker has washed their hands before they treat you. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 9/15 myeloma.uams.edu Ι 64 Patient Education Resources A diagnosis of cancer in and of itself can be overwhelming, not to mention all of the new information there is to learn. In order to meet the needs of our patients, their families and even other health care professionals, there are a number of educational resources available. UAMS Patient and Family Resource Center—UAMS Hospital At UAMS, we want to create a place that promotes healing, learning and active patient and family participation in the healing process. The Patient and Family Resource Center, located on the first floor of our hospital near the Lobby Cafe, is another way that we are trying to make it easier when you or a loved one is in the hospital. A volunteer concierge, who is knowledgeable of resources within the hospital, city and state, is available to provide information to you. Patient educators are also on call to answer any questions you may have and provide resource materials. You also have access to health information Web sites, connection to the UAMS library, books and pamphlets. The center is also a place for you to reconnect with your office if you need to. In our center, you have access to: • • • • Three computer work stations Video conferencing phone (for anyone with hearing impairments) Copier Fax machine/ printer Whether you need to know where to find your records or need a place to stay while you are here, you can find out what you need to know at the center. This is also a place to make connections with case coordination, pastoral care and other services or programs to make you and your family members’ stay as comfortable as possible. This room also serves as a quiet place to come and put your feet up and read a book. There are games and puzzles available if you are looking for an activity to keep you occupied. It is also a place where your family can come together and talk without being in a hospital room. You can even confer with the doctor or a chaplain there. The hours of operation are Monday through Friday, 9:00 a.m. to 4:00 p.m. Phone: (501) 526-4225 myeloma.uams.edu Ι 65 Cancer Institute Patient Support Pavilion Most patients find that cancer is easier to confront and handle when they know the facts about the disease and its treatment. The Patient Support Pavilion provides information and education for patients and their family members in a comfortable and inviting location. Located on the first floor of the Winthrop P. Rockefeller Cancer Institute (across from The Gathering Place), the Patient Support Pavilion offers a variety of resources such as: • Quiet family room for resting between appointments and making private phone calls • Wig and Hat Shop • Wi-Fi • Classes for patients and caregivers • Interfaith Chapel • MP3 players with guided imagery • Business Center with Internet access, FAX machine and copier • Brochures and booklets about different types of cancer and treatment options • Assistance in accessing online medical journals • Books for use by families or community groups • Information about cancer prevention The hours of operation are Monday through Friday, 8:00 a.m. to 4:30 p.m. Phone: (501) 686-5578 Patient Education Classes The Patient Education department within UAMS Medical Center offers daily classes on such things as central venous line (CVL) care, PICC care, subcutaneous injections, Infusaport care and Lovenox classes. Classes are held in the Ward Tower of the Central Building, Room IE/34 (first floor). For more information, please call (501) 686-8084. Other Resources There are a variety of other personnel that might be able to assist you in an informal way during your stay at UAMS. Such people include Transplant pharmacists, dietician, social workers and clinical nurse specialists. Each of these individuals can be available to answer questions and provide education to both you and your family members. myeloma.uams.edu Ι 66 Infusion 4 New Patient Caregiver Class The New Patient Caregiver Class covers helpful topics such as:  Overview of Myeloma  Labs  Medicines (including chemotherapy)  Side Effects of Treatment  Transplants When: Every Wednesday 8:00 a.m. to 9:00 a.m. Where: Infusion 4 – Conference Room (4th Floor, Cancer Institute) (501) 686-8220 Reservations at the front desk are requested, though not required. Instructors: Steve Davis, RN Frances Vanlandingham, RN myeloma.uams.edu Ι 67 Myeloma Institute Educational Resources ORIENTATION for Patients, Family & Friends Ask Questions and Get Answers! WHEN Wednesdays 3:00 – 4:00 p.m. LOCATION See schedule for location or contact the Myeloma Institute clinic at (501) 686-8230. is is a great listening and learning opportunity. Please join us. We are committed to serving you! Central Venous Line (CVL) Class HOSPITAL 12:30 p p.m. Friday Monday – Fr F Room 1E-34 of the Central Building (First Floor of Ward Tower near Doc Java) For more information, please contact the Patient Education Department at (501) 686-8084. Lovenox Class HOSPITAL On-call as needed – Monday - Friday Please call the Patient Education Department at (501) 686-8084 to schedule. OUTPATIENT On-call as needed – Monday - Friday Please call the Patient Education Department at (501) 686-8084 to schedule. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 10/15 myeloma.uams.edu Ι 68 Social Work Cancer affects more than just the physical body. It also affects other aspects of life, including work, leisure time, relationships and families, as well as personal thoughts and feelings. Sometimes handling the emotional parts of the journey can be as challenging as the physical parts, and the journey can become easier knowing you are not traveling alone. The Myeloma Institute social workers are available to you and your family/ caregivers at any time during your treatment. Even if you have plenty of support, you may at times find it helpful to talk with someone other than your family or friends. Psychotherapy can help you look at your methods of coping and handling stress and managing the depression and anxiety that so frequently go hand-in-hand with a serious illness. Counseling can be provided on an individual or family basis. Through resource and referral counseling we can assist you with housing arrangements for the long or short term, transportation, financial considerations, and other practical needs. Our goal is to help you create a home away from home while you are here. Advocacy is another service social workers offer – doing whatever it takes to help ensure that things are running smoothly and that your needs are being met. If you are admitted to the hospital, your discharge planning will be coordinated by the inpatient Myeloma Institute social worker. Discharge planning addresses home health services, medical equipment, transportation, and other services as needed. Social works are available in both the inpatient and outpatient areas. The phone numbers are: • Inpatient Social Worker - (501) 526-1700 • Outpatient Social Workers - (501) 686-8145 Care for the Caregiver We all depend on you, both family and friends, who sign on to partner with our patients and with us in giving excellent care and in helping assure that we provide our best. Since most of our treatment at the Myeloma Institute occurs in the outpatient realm, the role you play as care partners takes on great meaning. We – and our patient – can’t do it without you! Caregivers are an integral part of our approach to treatment and care. Your well-being and health are also important to us. We know that in giving care, it can become easy to put your own needs and comforts on the back burner or ignore them altogether. We want to remind you of the valuable role you play and give you a few tools to help you work through this experience with less stress and difficulty. Any time you find yourself feeling the fatigue or frustration of being the care partner – come back to this list for reminders or get in touch with one of our social workers. We’re always happy to hear from you. You and your family are on an extraordinary journey, and it is our privilege and desire to take it with you. myeloma.uams.edu Ι 69 What Does a Caregiver Do? • • • • • • • • • • • Keeps the Schedule Leads the Patient Where They Need to Go Protects the Patient from Illness and Injury Relays Information Carries All the Stuff Provides Comfort (Both Physical and Emotional) Checks Medication and Gives Prescribed Amount on Schedule Serves as the Designated Driver Handles Housekeeping and Hygiene Remains Patient and Understanding Works in a Moment of “ME” Time When Possible Caregiver Tips HAVE A SUPPORT SYSTEM JUST FOR YOURSELF. Seek out friends and family from home; support people from our clinic and/or the Little Rock community; our weekly support group; our Chaplaincy service; find a spiritual home here in Little Rock; use the mental health services provided by Social Work and Behavioral Medicine departments. TAKE TIME JUST FOR YOURSELF. Getting enough sleep, eating well, getting exercise, giving yourself time for things that give you pleasure – your favorite music or TV shows, eating out with friends, carving out time to spend on a hobby, getting a massage – whatever is pleasure or relaxation for you. Most people find it helps to take some kind of a break, even a short one, from cancer every day. ALLOW OTHER PEOPLE TO HELP. Often, friends and family want to help but don’t know what to do. Give people specific tasks – or give them a choice of ways they can help, like bringing meals, shopping, mowing the yard, keeping the children, and dealing with insurance issues. This also lets other people feel they are a part of things. When dealing with issues or needs like medication costs, call on experts to help. CREATE A SYSTEM TO KEEP OTHERS INFORMED AND INVOLVED IN YOUR LOVED ONE’S CONDITION. Have daily updates on your voice mail, send group emails, have a friend be the one who communicates with others. This will free up your time and keep you from telling things over and over. CREATE A SYSTEM FOR TRACKING MEDICAL AND OTHER HELPFUL INFORMATION THAT WORKS FOR YOU. Organize notebooks that include important names and phone numbers, instructions, and test results. Keep an ongoing list of your questions for the doctors and nurses. You can also journal your thoughts and feelings as a way of following what’s happening with you. THINK OF WAYS TO KEEP A HEALTHY RELATIONSHIP WITH YOUR PATIENT... myeloma.uams.edu Ι 70 AND ENJOY THE RELATIONSHIP YOU ENJOYED BEFORE THE ILLNESS. Be aware of changes in the relationship and how they impact you both – and your family. AS YOU DEAL WITH THE HEALTHCARE TEAM, FAMILY MEMBERS, AND FRIENDS, KEEP KEYS TO COMMUNICATION AND COPING IN MIND. Be assertive in a polite way. Make sure your questions are answered and your needs are being addressed. Be flexible, patient, and open-minded (which can be difficult under stress). Be ready for changes, delays, surprises, or setbacks and it will make them easier to deal with. They WILL happen! Know there are things beyond your control. Focus your energy and effects on the things you CAN control and take things one step at a time. Remember that one of the best survival tools is a sense of humor! It provides release. Laughter really is one of the best medicines! As a care partner, you will add many duties to what is already a long list of daily responsibilities. Drop anything you can – shift things to someone else if possible – even for a short time. Things have a way of getting on your list without you being aware of it. Any space you can create will help. Don’t expect too much of yourself! Just as our patient becomes tired during treatment, you will also be tired. Let yourself rest or catch a nap when needed! There will be times when you feel alone, lonely, sad or depressed, fearful, confused, frustrated or angry, worried, guilty – any number of feelings. We hope you’ll use someone here or in your support system from home to talk with. It’s always better to move those feelings out so they don’t pull you down. And if you have them for a long time – or feel that the stress of the situation never leaves you – please let us know so we might help care for you. myeloma.uams.edu Ι 71 Physical Therapy Consult with your physician before beginning any kind of physical therapy program. Physical Therapists are health care professionals who assess joint motion, muscle strength, muscle endurance, function of heart and lungs, balance, and performance of activities required during daily living. A physical therapist will encourage people of all ages to begin a fitness program of regular daily exercise to help prevent cardiovascular disease and musculoskeletal disorders. Fitness is defined by the American Physical Therapy Association (APTA) as “an ongoing state of health whereby all systems of the body are conditioned to withstand physical stress and perform required activities without injury.” A person who is fit has an aligned body, flexible and strong muscles, efficient heart, healthy lungs, a good ratio of body fat to lean body mass, and good balance. Fitness does not mean a person can run X amount of miles in X amount of minutes. Fitness is a state of being. What activities a person may choose to perform to achieve and maintain fitness is up to the individual person. There are six elements of fitness according to the APTA: 1. 2. 3. 4. 5. 6. Aerobic Capacity Body Structure Body Composition Body Balance Muscular Flexibility Muscular Strength Aerobic Capacity Aerobic capacity is an index of a person’s cardiovascular system’s ability to transport oxygen to working muscles during exercise. To improve aerobic capacity, a person must achieve aerobic response. Individuals will vary on necessary levels to achieve an aerobic response. Aerobic response is usually reached by exercising at 60-80 percent of your maximum heart rate. The ideal rate for exercise (60-80 percent of maximum) is a person’s target heart rate (target heart rate – (220-age) x 60-80%). A person should exercise 20-30 minutes at least three times a week to attain aerobic fitness. Some aerobic activities include swimming, running, bicycling and hiking (target heart rate – (220-age) x 60-80%). To calculate your heart rate, lay two fingertips on the palm side of wrist near your thumb and count the pulse for 15 seconds and multiply by four. Body Structure A physical therapist will evaluate misalignments in the upper and lower extremities, head, neck and trunk. Small imbalances in the way a person stands may lead to pain and injury. Identified weaknesses or imbalances can be isolated for strengthening to improve a person’s posture. myeloma.uams.edu Ι 72 Body Composition Body composition is the ratio of fat to lean body mass. Body composition tends to be a better indicator of fitness than just body weight. Body composition must be measured through special tests and instruments. Ideal range of body fat is 10-15% for men and 15-22% for females. An excessive fat-to-lean body composition puts unnecessary stress from weight on a person’s skeletal structure during exercise. Body Balance To check balance, a physical therapist may ask a person to close their eyes and stand on one leg for a brief period of time. This simple test can examine the neurologic process to control balance. Minor balance problems can place a person at an increased risk for injury. Muscular Flexibility A person’s muscles should be flexible to allow for the full range of motion. Muscles should be allowed to lengthen without too much effort. A shortened or inflexible muscle may be more susceptible to stress and injury. Muscular Strength Muscles should be able to exert force and control movement. Strengthening exercises should condition muscles that will be used to perform activities of a person’s choice. Starting Your Fitness Way of Life Decide what sports and activities you enjoy. Make a list of these activities and how many times you feel you could perform them during an average week. It is helpful to find a partner who can help to motivate you and keep you accountable to your program. Begin slow and at lower intensity and gradually increase frequency and intensity. Achieving and maintaining fitness is a lifelong commitment. State of fitness need not lessen with age. Just because you grow older and become less active, you needn’t resign yourself to being less fit. Physical Therapy Can Help With: • Patients returning to productive lives • Improving quality of life through maximizing physical independence and function, minimizing pain, impairment and pain Four Stages of Cancer Rehabilitation: • Preventative– Treatment is implemented to prevent disability or to reduce the extent of further disability. • Restorative– Emphasizes the return to premorbid state of functioning without the limitations of a disability. • Supportive– With the disease itself controlled, an active level of function is achieved within the limits of the disability. • Palliative– Patient education helps reduce some of the discomfort or disability resulting from the disease, even though a progressive decline in function is to be expected. myeloma.uams.edu Ι 73 Reduce the Severity of Anticipated Disability Patients who are hospitalized for high dose chemotherapy may experience prolonged bed rest and reduced mobility. To help prevent complications like ulcers, contractures, fatigue, weakness and orthostatic hypotension, patients should be taught techniques for moving in bed and moving joints of extremities through full ranges of motion. Improved function should be the goal of physical therapy. Not being active can also reduce the effects of disease. Goals will focus on functional activities like getting into a chair and walking to and from the bathroom. Physical Therapy Evaluation During the evaluation a physical therapist will screen for impairments to systems (cardiovascular, musculoskeletal, and neurological). Baseline data on strength, endurance, heart rate, blood pressure respiratory pattern and frequency will be compiled. An inquiry will be made into a patient’s prior activity level, including basic activities of daily living, functional and work status, home environment, familial and friend support and work status. After a stem cell transplant, a patient may have decreased strength of the arms and legs, reduced cardiovascular endurance (only able to walk short distances before fatigue). Patients may also have symptoms of nausea and vomiting. The physical therapy program is designed to reduce the effects of immobility and prolonged bed rest and to increase, or at least maintain, current levels of cardiopulmonary endurance and muscle strength. Cardiopulmonary training includes light-to-moderate intensity designed for the patient by the physical therapist. Patients who are debilitated must start out slowly, exercising for a few minutes at a time several times a day. The goal is to engage in aerobic exercise at a person’s target heart rate for 30 minutes a day. The patient may not reach the above goal while in the hospital. At discharge a patient will be given a home program to perform in order to achieve the above cardiovascular goal. Exercise should be enjoyable and be perceived by the patient as challenging. The physical therapist will monitor the patient’s vital signs to help the patient maintain proper exercise intensity. If patients are not neutropenic and are not challenged by walking about the unit, a patient may begin to receive treatments in the physical therapy department. The department has some endurance equipment (stationary bike, recumbent stepper). Muscular Strength– A simple muscle-strengthening program will be designed. Exercise program will begin with non-resistive (not weights) exercise and progress to resisted exercise. The goal is to perform 10-15 reps of each exercise, two sets per day. Typical progression is to perform 10 reps without resistive weights and progress to 15 reps and then begin adding weights. Decisions about exercise must be made on a day-to-day basis using laboratory blood tests and vital signs. The exercise precautions specifically apply to platelet count and patients at risk for hemorrhage. myeloma.uams.edu Ι 74 Physical therapy helps enhance the quality of life for patients who have highly complex problems related to patients whose medical treatment includes a bone marrow transplant. Risk of falling is one of the most serious consequences of both the cancer and cancer treatment. Weakness, fatigue, pain, orthostatic hypotension, peripheral neuropathy and decreased flexibility in various combinations can lead to falls. Fall prevention is essential to a patient who has a combination of complications. A patient with metastasis to spine or long bone may fracture these bones in a fall. It is very important for a physical therapist to choose an appropriate assistive device to best help the patient. Patient Care Information Steroids and Muscle Weakness Regardless of where you are in your disease process, you have probably experienced weakness to one degree or another. There are many factors that can contribute to muscle weakness including anemia, extensiveness of your disease, and side effects of medications. One of the drugs frequently used in our protocols is dexamethasone. This is an anti-inflammatory immunosuppressive drug that has numerous uses. One of the known side effects of this drug is muscle weakness. In order to minimize this potential, we encourage routine, consistent exercise. The type and amount of exercise that will be appropriate for you will of course be related to your overall condition and where you are in your treatment plan. Included in your manual is an entire section devoted to exercise. We will be happy to obtain a physical therapy consultation for you should you have concerns or needs in this area. Side Effects of Chemotherapy and How Physical Therapy Can Help Myelosuppression– depending upon the level of blood counts, a physical therapist may alter the level of intensity to best fit a patient’s ability. Anemia– a patient may have increased pulse and respiratory rate with increased cardiac output to compensate for the reduced oxygen supply. A patient may become easily fatigued and a physical therapist will adjust activity levels to best suit a patient’s ability to participate. Peripheral Neuropathy– patients may develop neuropathies and parathesias with varying weakness in the muscles of hands or feet. Splints can be obtained to maintain proper position while the patient waits for resolution. Gastrointestinal– nausea and vomiting may cause acute discomfort and weakness. Physical therapy should be encouraged to maintain strength, endurance and ambulation. myeloma.uams.edu Ι 75 Multiple Myeloma Rehabilitation Program Introduction: The race is won with strength and endurance… with many other factors playing a major part in winning a race, but without strength and endurance, winning is not an option. Attitude and determination allow the strength and endurance to be better utilized. Each person is responsible for the attitude and determination needed to promote healing. The following information defines the Inpatient and Outpatient University Rehab Programs that evaluate, maintain and improve strength and endurance for each myeloma patient. These plans require the team of professionals, the patient, and their family to be made successful. Outpatient Rehab Program: The Multiple Myeloma Clinic initially sees the patient and refers them to the Therapy Clinic in the Stephen’s Spine Center, B level. The referral is completed and signed by the physician requesting the evaluation and treatment. The evaluation includes strength and endurance testing, functional limitations and equipment needs to perform exercise and activities of daily living. The evaluation determines the category the patient enters; category One, Two, or a combination of both. If the patient stays in the Little Rock area, a complete daily program is established using the group criteria. If the patient is leaving the area, a home or community program is recommended to maintain and/ or improve strength and endurance. If the patient returns to the clinic after 30 days or more, another referral is required, if indicated, to re-evaluate the patient’s strength and functional status. Every patient is evaluated; treatment programs initiated, or recommended fitness programs defined. Our goals are to maintain and/or improve strength and endurance, and to improve functional abilities as treatment processes are introduced. The program is family oriented where the patient and their family members may participate in the fitness programs. Fitness memberships are available for patients and family members at the Center on Aging (Resistance Training Fitness Program) and the Spine Center (Aquatic Fitness Program). myeloma.uams.edu Ι 76 Inpatient Rehab Program: The inpatient program is initiated with an order requesting a Physical Therapy evaluation and treatment. Once the patient is evaluated, they are placed in one of two patient categories; Category 1: Patient is independent with mobility but needs cardiopulmonary and/ or strength training. Category 2: Patient is not functioning independently and requires Physical Therapy for mobility/gait. Category 1 patients are instructed in exercise programs that include unit equipment and/or walking “track” for strengthening and endurance training. This is performed on the unit or in Physical Therapy Clinic on the first floor. Category 2 patients receive treatment administered by a Physical Therapist to include assistance with transfers, gait, strengthening exercises, and more. The needs of the patient determine the initial placement in a category and movement from one to the other. If the patient’s condition indicates increased weakness moving from Category 1 to 2 is indicated. If the patient’s condition improves, indicated by gaining strength, they will leave Category 2 to 1 and work independently to maintain their progress. Besides maintaining and increasing strength and endurance, the inpatient program’s goal is to prevent further hospitalization if possible. Once discharged from the inpatient program the patient and family may move back to the outpatient program if they are living in the area. Both the outpatient and the inpatient programs teach the patient and their family the importance of exercise, strength training, and building endurance to sustain the demands of the treatment processes. myeloma.uams.edu Ι 77 myeloma.uams.edu Ι 78 Nutrition A well balanced diet is an important component of your overall treatment plan. The nutrients in food, especially proteins available in milk products, meats, fish, tofu and nuts, are essential for replenishing your body’s tissues that have been affected by treatment. Obviously, during different phases of your treatment plan, your appetite will wax and wane. There will also be periods during your therapy that you may have dietary restrictions due to neutropenia (low white blood cell count) and be at greater risk for infection. This section of the notebook consists of tips for managing different problems affecting appetite and oral intake, and an explanation of the neutropenic diet. We have a dietician who works with our patients and will be happy to assist you with any of your dietary/nutritional needs. Strategies for Dealing with Nutritional Problems Mucositis/Esophagitis Possible Causes: Chemotherapy, Radiation, Oral Infections DO: • Eat food lukewarm or cold • Cook foods until tender and soft • Try to eat high calorie, high protein foods to aid in healing • Use nutritional supplements (such as Ensure, Boost or Carnation Instant Breakfast) • Eat soft foods such as soups, mashed potatoes, eggs, cooked cereals and milkshakes • Prescribed mouth care– Though it will not feel pleasant, the end result will be fewer potential germs in your mouth and faster healing of sores. • Request pain medicine as needed; you may try taking pain medicine 30-45 minutes before meals DON’T: • Eat or drink tart or acidic foods and beverages • Eat or drink salty foods and drinks, including broth • Use strong spices such as pepper, chili powder, nutmeg or cloves • Eat rough or coarse foods such as raw fruits and vegetables, dry toast, grainy cereals and crunchy snacks • Drink alcoholic beverages • Eat or drink extremely hot foods or beverages myeloma.uams.edu Ι 79 Dry Mouth Possible Causes: Radiation therapy and Medications DO: • Add sauces, gravies, broth and dressings to foods • Suck ice chips, ice pops, gum or hard candies to keep mouth moist • Drink liquids with your meals • Perform mouth care diligently • Ask MD or APRN about artificial saliva DON’T: • Eat plain meats, bread products, crackers or dry cake • Eat or drink very hot foods or beverages • Drink alcohol Changes in Taste Possible Causes: Radiation, Chemotherapy, Some Medications DO: • Eat and drink foods and beverages cold or at room temperature • Eat strongly flavored foods such as chocolate, lasagna or spaghetti (unless you have mouth or throat sores) • Eat tart or spicy foods (unless you have mouth or throat sores) • Eat protein foods without strong odors such as poultry, eggs and dairy rather than those with strong odors such as beef and fish • Use plastic utensils if foods seem to have a metallic taste • Add sauces to foods Nausea and Vomiting Possible causes: Chemotherapy, Radiation, Infections, Pain Medications and some Antibiotics DO: • Eat small, frequent meals • Eat dry crackers or toast • Eat cold foods rather than warm foods because they tend to have less food odor • Eat food lower in fat such as cooked vegetables, canned fruit, baked skinless chicken, sherbet, pretzels, toast, crackers, vanilla wafers and angel food cake • Sip liquids slowly through a straw • Ask that your food trays be brought in your room without the cover so that you won’t be overwhelmed by the smell when the cover is removed • Ask for anti-nausea medication before it becomes out of control; consider scheduling anti-nausea medication 30 minutes before meals DON’T: • Eat foods that are very spicy or have a strong odor • Eat foods that are extremely sweet • Eat greasy foods • Drink hot liquids or a lot of liquids with your meals • Lie flat immediately after eating. You should keep your head elevated above the level of your heart for 30-60 minutes following your meal. myeloma.uams.edu Ι 80 Lack of Appetite/Weight Loss Possible causes: Radiation, Chemotherapy, Infection, Depression, and Fatigue DO: • Eat small, frequent, high-calorie meals • Drink high-nutrient liquids such as juice or milk rather than drinks such as coffee, tea or diet soda • Make the most of that “nutritional opportunity” by choosing higher calorie, nutrient-dense foods such as cheese, eggs, peanut butter, whole milk, ice cream, nuts and instant breakfast beverages • Add protein powders to cooked cereals and shakes • Keep trying to eat; don’t give up • Meet with one of our behavior medicine or social workers if you believe there might be any emotional/ psychological barriers to your eating well Diarrhea Possible causes: Radiation, Chemotherapy, Some Medications, and Intestinal Infections DO: • Eat smaller amounts of food at each meal • Increase your intake of fluids to prevent dehydration • Drink fluids between meals, rather than with meals • Drink beverages that are high in potassium (such as tomato juice, sports drinks or orange juice) unless otherwise directed by your MD • Eat food that is low in fiber such as bananas, potatoes without the skin, rice and white bread DON’T: • Eat high fiber foods such as bran, whole grain cereals and bread, nuts, seeds, popcorn and raw vegetables • Eat high fat foods that may irritate your GI tract • Eat or drink foods and beverages that contain caffeine. The caffeine will act as a stimulant on the GI tract During your treatment process, you may experience some of the problems mentioned above, perhaps more than one at the same time, which can certainly make eating a challenge! Our clinical dieticians are here to assist you with any questions or concerns you might have. Rely on their expertise to help you come up with a plan that works for you. myeloma.uams.edu Ι 81 Water and Beverage Safety Guidelines Public water quality and treatment varies throughout the United States. Always check with the local health department and water utility about the safety of household and community tap water and ice for use by people who have a weakened immune system. Tap Water: Water from your home faucet is safe if your water is from a city water supply or municipal well that serves highly-populated areas. Well Water: Well water from private or small community wells is not thought to be safe for drinking by people who have a weak immune system and are at risk for infection. Well water must be tested daily and found to not contain coliforms and Cryptosporidium organisms to be safe. Some ways that well water could become contaminated:  Construction occurs near the well  Well depth is shallow  Well is near a dairy or large numbers of livestock  Recent flooding has occurred in the well area Municipal Wells: Drinking well water from municipal wells serving highly-populated areas is thought to be safe because the water is tested for contamination more than two times each day. If you have a weak immune system and only have access to a private or small community well, other approved water sources should be used instead. These include:  boiled water  bottled water (see guidelines below) Home Water Filters Not Safe: Common home water filtration systems do not remove bacteria or viruses. If the well water supply is chlorinated using guidelines provided by your local health department, the chlorinated water treated with one or more of the following is thought to be safe to consume:  Reverse osmosis treated  Distillation  Filtered through an absolute 1 micron or smaller filter (See “Water Filters” section on Page 2.) Safe Water Sources The sources of water found below are suggested if your water is not from a city water or municipal well supply:  Boiled Water–At home, safe water can be made by bringing tap water to a rolling boil for one minute. The water should then be stored in a clean, covered pitcher in the refrigerator. Discard water not used within 72 hours (3 days). This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 82 Water and Beverage Safety, continued (Page 2 of 2) Safe Water Sources, continued  Distilled Water–Water may be distilled using a steam distillation system. The water should then be stored in a clean, covered pitcher in the refrigerator. Discard water not used within 72 hours (3 days).  Bottled Water–Most bottled water has been processed to remove organisms known to cause stomach or intestinal infection. Bottled water labels reading “well water”, “artesian well water”, “spring water”, or “mineral water” do not ensure that the water is safe to drink. Water labeled as having been treated with one or more of the following are thought to be safe: – Reverse osmosis treated – Distillation – Filtered through an absolute 1 micron or smaller filter (NSF Standard #53 for cyst removal) To be sure that certain bottled water has gone through one of the above processes, contact the International Bottled Water Association (IBWA) at 1-800-928-3711, or visit their web page at www.bottledwater.org. If the IBWA does not have information on a brand, call the bottling company. Members of the International Bottled Water Association (IBWA) follow more strict manufacturing practices in their water bottling process than those practices currently mandated by the United States Food and Drug Administration. For that reason, water bottled by a member of the IBWA may be better than water produced by non-member bottlers. Water Filters Most water filtration devices will not make the water safe if the water supply has not been chlorinated. If you choose to install water filters on household water taps, purchase only filters certified by National Sanitation Foundation (NSF) International. The following terms must also be met: a. The filters must be designed to remove coliforms and Cryptosporidium. Any of the ones below are acceptable:  Reverse osmosis filter  Absolute pore size of filter 1 micron or smaller  Tested and certified by NSF Standard #53 for cyst removal b. The water tap filter must be installed before the water tap. c. Manufacturer directions must be followed for filter maintenance and replacement Portable water filters (such as a Brita® or Pur® system) as well as refrigerator-dispensed water and ice machine systems do not meet filtration standards. Portable water systems filter out chemical impurities, not bacteria. If a portable water system (such as a Brita® pitcher) is used in combination with a safe water supply (to improve water flavor and remove chlorine and other impurities), it is recommended to change the system’s filters frequently according to manufacturer’s guidelines. For a list of approved filtration systems, call the NSF International, at 1-800-673-8010 or visit their home page at www.NSF.org (go to the section entitled “Home Water Treatment Devices”). Information obtained from the Seattle Cancer Care Alliance. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Created 5/09 myeloma.uams.edu Ι 83 Food Handling Tips 1. Wash hands before and after handling food. 2. Keep area where food is prepared clean and use a good dishwashing soap on the work surface often. 3. After cutting up raw meats, soak the cutting board and all utensils for 30 minutes in a solution of one part bleach to nine parts water (example: l oz. bleach to a cup of water) 4. When preparing foods, the hands should be kept away from the hair, mouth and nose. If possible, jewelry (especially rings) should be removed, because they can hold germs. 5. Dishes and silverware should be washed in hot soapy water, rinsed and air-dried, or washed and dried in the dishwasher on the heat cycle. 6. Clean inside of refrigerator regularly with soap and water to control mold. Discard food if it is over 3-4 days old (especially salad dressings, sauces, milk and egg products, condiments, and processed meats). 7. Eliminate all contact between raw and cooked foods. 8. Keep cold foods cold (<40 degrees) and hot foods hot (>140 degrees). 9. Defrost meat, turkey, chicken in the refrigerator. 10. Avoid mucous membrane (eyes or mouth) contact when handling raw meat. Wash hands thoroughly after contact with raw meat. 11. At the supermarket, pick up perishables last and take them home right away. 12. Never use canned foods if the can is swollen, dented, or rusted. 13. Wash all fruits and vegetables before eating. 14. Use plastic bags in all trash cans for proper disposal. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 84 Mouth Care During Chemotherapy Many of the chemotherapy drugs you receive have side effects. One side effect is mucositis or stomatitis. Both terms refer to soreness or sores in your mouth and your throat. The drugs can also cause dryness and irritation. All of these side effects can cause some bleeding and put you at risk for infection. This soreness usually happens when your blood counts are low and goes away as your blood counts return to normal levels. Why does this happen? 1. Chemotherapy kills fast-growing cells in the body. The mouth is lined with such cells. 2. Chemotherapy decreases the white cell count. White blood cells fight infection. 3. Chemotherapy decreases saliva production, leading to dryness of the mouth as well. Some bacteria that live in the normal mouth are not harmful. However, with the loss of the lining cells in the mouth, reduction in saliva and lowering white blood cells, the mouth loses its ability to fight these bacteria. As a result, mouth sores are produced. A similar type of lining extends into the throat and stomach, so the infection spreads further down the mouth. Mouth sores can cause:  Pain  Bleeding  Inability to eat and drink  Change in taste  Infections  Trouble swallowing If the infection spreads to the stomach, this can lead to diarrhea and dehydration. A fungus called Candida Albicans causes most common fungal infections. It is referred to as thrush or Candidiasis. How do mouth sores look? At first, it may be just redness in some areas of the mouth. Swelling of the tongue or lips and the inside of the lips may also occur. You may see ulcers or white scaly patches that may bleed if touched. You may have dry, cracked lips. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 85 Mouth Care, continued (Page 2 of 2) What can I do to care for my mouth?  Take care of your dental needs before treatment begins.  Inform your doctor or nurse as soon as you see any signs of mouth sores during or after treatment.  Brush your teeth and gums with a soft toothbrush, toothpaste and a gentle touch every morning, after eating, and before going to bed at night. Brushing too hard can cause damage to the tissues in the mouth.  Avoid commercial mouthwash that contains alcohol. Alcohol in your mouth rinse or regular consumption of alcohol can be highly detrimental to your health.  Try to floss. You can floss as long as your platelet count is 50 (50,000) or more. You must stop flossing when your platelet count falls below 50.  It may be difficult to brush during treatment as your neutrophil count goes down. It is important to always keep your mouth moist. In this case, you can use disposable oral swabs to clean your teeth and mouth. Rinse with the mouth wash provided, saline, or salt water for added cleaning.  Use lip balm and drink plenty of fluids.  Do not eat very spicy foods.  Eat soft, easily chewable foods such as oatmeal, porridge and yogurt.  Do not smoke!  If you wear dentures and your mouth becomes irritated or sore, it is best to remove your dentures and let them soak. To allow your gums to heal, wear your dentures only when you have to, when going out or when eating. This will allow your gums to heal.  There are other mouth care products you can get if needed. Let your nurse or doctor know if your mouth is too dry, if your saliva is too thick or if you are having pain. These and other problems with your mouth can be treated and resolved. For questions or problems, call ________________________________________ This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 7/12 myeloma.uams.edu Ι 86 Having Trouble Sleeping? 1. Avoid caffeine. It is a stimulant that can keep you up! 2. Avoid nicotine for the same reason. 3. Avoid alcohol. It may wake you up later in the night. 4. Exercise regularly. Don’t do it right before bedtime. Give yourself at least 3 hours between exercise and bedtime. 5. Don’t nap during the day if you have trouble getting to sleep at night. 6. Set a regular, relaxed bedtime routine - even on weekends. 7. Use your bed for sleep (and sex), but nothing else. 8. If you can’t sleep after 30 minutes, get up and try doing something to relax you such as reading or listening to soft music. 9. Try not to bring the trials and worries of the day to bed with you. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 5/11 Reviewed 9/14 myeloma.uams.edu Ι 87 Giving a Subcutaneous Injection Introduction: Your doctor will be sending you home with the drug, ______________________________________. It will be injected into your skin. This is called a subcutaneous injection. Equipment: You will need the drug, alcohol swabs, a syringe and a needle. Your nurse will show you which syringe you will be using. Syringes can be purchased at your local pharmacy. Procedure: 1. Locate your site of injection. You may use the back of the arms, upper thighs, or the abdomen. Avoid the navel and waist. (See pictures on Page 2.) 2. Cleanse the area of skin with an alcohol swab. 3. Gently pinch up the skin surrounding the site of injection and hold it firmly. 4. Insert the needle at a 45°–90° angle. 5. Once the needle is in the site, release the grasp on the skin. 6. Inject the drug slowly until all the medication is gone from the syringe. 7. Withdraw the needle. 8. Do not rub the area. Do not replace the needle cover. 9. Place the syringe into a puncture-proof disposable container. 10. Return the container when it is ¾ full. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 88 Subcutaneous Injection, continued (Page 2 of 3) Other Information: Be sure to rotate your injection site using the pictures provided: Call your doctor or nurse if you have any problems. Notes: _____________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 89 Subcutaneous Injection, continued (Page 3 of 3) Drawing Up Your Medication: 1. Inject air into the vial. 2. Turn the vial upside down and withdraw the medication. The tip of the needle should remain in the fluid to avoid getting air into the syringe. 3. Remove air or bubbles from the syringe by:  Gently tapping the barrel of the syringe so that air bubbles float to the top.  Push the plunger until all air is removed from the syringe.  Now refill the syringe to the correct dosage of medication. For further instructions or questions, please contact _________________________________ This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 10/05 Reviewed 11/14 myeloma.uams.edu Ι 90 CVL Class Schedule for Patients and Families Hospital CVL – Room 1E-34 (1st Floor of Ward Tower) 12:30 p.m., Monday - Friday For more information, please call the UAMS Patient Education Department at 686-8084. Directions to the Classroom from the Hospital: the elevator to the FIRST FLOOR.  Continue straight past the LOBBY CAFE and ADMISSIONS.  After the INFORMATION DESK, turn RIGHT.  The classroom is STRAIGHT AHEAD.  Take Video Call 526-4766 from your hospital phone to view the video below: 202 Giving An Antibiotic Through PICC This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 3/15 myeloma.uams.edu Ι 91 Arrow Catheter Care Your line requires routine care and maintenance. Without proper care there is a risk of infection and other problems. Please follow the instructions on this handout carefully for proper care of your line. When your therapy is complete, your line is usually removed. Please check with your doctor to discuss having your line removed. Type of Line: Arrow Read these instructions before you start. Follow them step by step as you do your catheter care. Things to Remember 1. Catheter care should be done in a clean, dry place away from foods, drafts, children or animals. 2. Do not care for your line in the bathroom. 3. Clean surface area where your supplies will be placed with alcohol. 4. Remove any jewelry. 5. Use a liquid anti-bacterial soap in a pump dispenser. 6. Always wash your hands for 1-2 minutes under running water before touching your line. 7. Use a paper towel to dry hands and turn off the water. Supplies you will need:  CVL Dressing Change Kit - 5 or enough to last until your next clinic visit  Caps for changing caps on lumens  Pre-filled Heparin Syringes  Pre-filled Saline Syringes  1 box of alcohol pads  Sterile gloves (optional)  Masks (optional) When you are discharged, ask your doctor or nurse who to call if you have questions or concerns about your line. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 92 CVL Care, continued (Page 2 of 4) Flushing the Catheter The catheter should be flushed every 24 hours and after each use. 1. Remove 3 saline and 3 heparin syringes from their packages. You will need 1 saline syringe and 1 heparin syringe for each lumen. 2. Pick up saline syringe and remove cap. Break seal on syringe by pulling down on the plunger. Then tap the syringe to remove any bubbles. 3. Push plunger up until a drop of fluid comes out the top of the syringe. Do not lay down an uncapped syringe. 4. Open alcohol pad, pick up lumen and scrub with alcohol for 15 seconds. 5. Attach saline syringe to lumen by pushing and twisting the syringe clockwise onto the cap. 6. Open clamp and infuse 5 - 10 ml of saline (use the whole syringe). Close clamp. 7. Pick up heparin syringe and remove cap. Break seal on syringe by pulling down on the plunger. Then tap the syringe to remove any bubbles. Push plunger up until a drop of fluid comes out the top of the syringe. Do not lay down an uncapped syringe. 8. Open alcohol pad, pick up lumen and scrub with alcohol for 15 seconds. 9. Attach heparin syringe to lumen by pushing and twisting the syringe clockwise onto the cap. 10. Open clamp and infuse 1- 2 ml of heparin. Close clamp. 11. Repeat steps 2 – 10 for the additional two lumens. Note:  If you are unable to flush the catheter, do not force the fluid through the cap. Instead, reclamp, then remove the syringe and call the clinic.  If you forget to close the clamp before removing the heparin syringe from the line, open a new heparin syringe and re-flush the line. Remember to close the clamp before removing the syringe. Dressing Change Transparent dressings must be changed every 7 days or as needed. Covaderm dressings must be changed every 48 hours. Gauze dressings must be changed daily. Note: Change any dressing that is loose, wet, or soiled. DO NOT use scissors to remove old dressing. How to Maintain a Sterile Field 1. Place only sterile items within the sterile field. 2. Areas outside the drape are considered non-sterile. 3. Remember the 2 inch margin. 4. Open and dispense items onto the sterile field without contaminating them. 5. Do not allow unsterile hands to reach across the sterile field or touch sterile items. 6. When in doubt about whether something is sterile, consider it not sterile. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 93 CVL Care, continued (Page 3 of 4) Use alcohol to clean the surface area where supplies will be placed. 1. Gather your supplies:  CVL Dressing Kit  Waste can 2. Wash hands with a liquid antibacterial soap. 3. To remove the old dressing:  Carefully loosen outer edges. (Be sure patient turns head away from insertion site.)  Anchor 3 lines of lumen with one hand while peeling dressing toward the insertion site to remove.  Discard dirty dressing (along with gloves used to remove old dressing) into waste container.  Wash hands again with liquid antibacterial soap. Note: DO NOT touch the catheter site with your hands. 4. Open the dressing change kit. Touch only the outer corners of the kit. Do not touch the contents with your hands. 5. Remove the mask and sterile glove packet without touching the contents of the kit. 6. Open sterile drape touching only the edges. Holding onto the outer edges of the drape carefully place the drape on the table. Pick up the remaining dressing change kit and drop the contents onto the center of the sterile drape without touching the drape. 7. Lay sterile glove packet on the table with the cuff end facing you (do not lay the gloves on the sterile drape). Open the glove packet and put on the sterile gloves. Do not contaminate the gloves. Remember, “sterile touches sterile.” 8. Pick up the Chloraprep applicator. Pinch the wings on the applicator to release the antiseptic. Do not touch the sponge with your fingers. Wet the sponge by pressing and releasing the sponge against the treatment area. 9. Clean the area with the Chloraprep by using up and down and back and forth strokes. Clean the area for 30 seconds. Allow to air dry for 30 seconds. It may take longer than 30 seconds for the area to dry. Do not blot or wipe the area for any reason after the Chloraprep has been applied. It is vital that the cleansed area be dry before continuing to the next step. 10. Open the medicated foam disk package and place the disk (printed side up) around the insertion site of the catheter using the slit to fully surround the catheter. The arrows on the disk should be pointing toward the stitches. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 94 CVL Care, continued (Page 4 of 4) Dressing Application 1. Pick up the dressing. Remove paper backing. 2. Lay the dressing with the dressing centered over the insertion site and stitches. Gently press the dressing in place. 3. Remove gloves. 4. Place one piece of tape under the lumens/lines catching the bottom edge of the dressing. 5. Place another piece of tape over the lumens/lines on top of other piece of tape. 6. Write the date on the edge of the dressing. 7. Wash your hands. Changing the Injection Cap/Smart Site Needleless Valve Change the injection cap once a week or more often as needed. 1. 2. 3. 4. 5. 6. 7. Clean surface area with alcohol. Wash hands with a liquid antibacterial soap. Make sure the catheter is clamped. Open new caps and leave in package. Remove the old cap and hold the catheter so the end does not touch anything. Pick up the new cap and take off the protector tip. Screw the new cap into place. Note: Be sure to put all used syringes, needles and caps in a sharps container. Keep the sharps container out of the reach of children. Call the doctor or clinic if you notice any of the following:  Redness or swelling  Leaking at insertion site or anywhere along the catheter  Drainage  Cannot flush the catheter  Pain or tenderness  Broken stitch  Fever over 101 degrees  Pain or swelling in the neck, arm, ear or insertion site Showering The dressing over your line is not waterproof. To take a shower, cover the dressing and all lumens with a water proof covering such as plastic wrap, a plastic baggie or any commercial product made for that use. Tape the edges of the covering with water proof tape. Try not to allow water to fall directly on your line even though it is covered. After showering, completely dry the covering and then remove. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 11/13 myeloma.uams.edu Ι 95 SASH for PICC, Triple Lumen Cooks and Arrows Supplies:  Two (2) pre-filled saline (Sodium Chloride) syringes  One (1) pre-filled heparin syringe  Alcohol wipes  Infusor/Intermate SASH: S– Saline (10 ml) A– A Medication or Antibiotic S– Saline (10 ml) H– Heparin (1 ml) How to connect antibiotics: 1. Gather supplies and wash your hands. 2. Pick up saline syringe and remove cap. Break seal on syringe by pulling down on the plunger. Then tap the syringe to remove any bubbles. Push plunger up until a drop of fluid comes out the top of the syringe. Do not lay down an uncapped syringe. 3. Open alcohol pad, pick up lumen and scrub with alcohol for 15 seconds. 4. Attach the syringe, open clamp and flush your IV catheter with 5-10 ml of saline. Close clamp and remove syringe. 5. Pick up medication and unwind tubing. Scrub cap with alcohol pad, remove cap from medication and attach medication. Open the clamps on the catheter and the medication. The medication is now infusing. 6. The medication is finished when the balloon (or bag) is flat. Close the clamps on the medication and catheter. Remove the medication. 7. Pick up saline syringe and remove cap. Remove air from syringe. Open alcohol pad, pick up lumen and scrub with alcohol. Attach the syringe, open clamp and flush your IV catheter with 5-10 ml of saline. Close clamp and remove syringe. 8. Pick up heparin syringe and remove cap. Remove air from syringe. Open alcohol pad, pick up lumen and scrub with alcohol. Attach the syringe, open clamp and flush your IV catheter with 1-2 ml of heparin. Close clamp and remove syringe. This information was created and reviewed through a partnership with the UAMS Patient and Family Advisory Councils. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 10/13 myeloma.uams.edu Ι 96 How to Use Infusors/Intermates (24 hours or greater) Procedure: 1. Take infusor out of plastic bag and straighten tubing. 2. Take winged cap off the end of the tubing. Do Not Touch the End! 3. Wait until liquid comes to the end of the tubing. (This may look like a bubble.) 4. Scrub cap on central line with alcohol pad for 30 seconds. (Use a twisting motion like you are juicing an orange.) 5. Screw tubing onto central line. Unclamp line. 6. Keep the device close to your body. It works best at body temperature. Try wearing a T-shirt with a pocket and put the device in the pocket next to your body. The balloon that holds the medicine will get smaller as the medicine goes in. 7. Put empty infusors into the container given to you. Bring the full container back for proper disposal. 8. Screw needleless cap on line if all medications are complete. If you have questions about infusors, please call Infusion 4 at (501) 686-8220, 24 hours a day. This information has been reviewed and recommended for use by the UAMS/CPED/Patient Education Advisory Committee. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 8/11 Reviewed 11/14 myeloma.uams.edu Ι 97 myeloma.uams.edu Ι 98 Palliative Care Program What is Palliative Care? Palliative Care is an area of medical practice dedicated to actively supporting patients and families who are dealing with far-advanced, life-threatening illnesses and/or end-stages of chronic medical conditions. The overall goal of care is to relieve patients’ suffering. Thus, the focus of care is on control of a patient’s symptoms rather than control of the disease. Unlike hospice, Palliative Care can be appropriate for patients not terminally ill. In fact, palliative interventions are often incorporated into treatment plans along with curative or life-prolonging therapies. A Team Approach The Palliative Care Program utilizes an interdisciplinary team to help medical providers, patients and their families deal with the multiple aspects of an advanced illness. The UAMS Medical Center Palliative Care Team consists of providers from the following disciplines: • Physicians, Certified by the American Board of Hospice and Palliative Medicine • Staff Chaplain, Board-Certified as a Clinical Chaplain by the College of Pastoral Supervision and Psychotherapy • Registered Nurse • Advanced Practice Registered Nurse (APRN) • Social Worker • Healthcare professionals from other disciplines, such as pharmacy and physical or occupational therapy, are also utilized on an as-needed basis. The Palliative Care Program consists of a hospital consultation service and outpatient services: Inpatient Services • Hospital consultation on difficult-tomanage symptoms (i.e. pain) • Support to clinicians, patients, and families facing difficult medical decisions • Facilitates patient discharges to settings more appropriate for achieving goals of care Outpatient Services • Clinics for symptom management for ambulatory patients • Home visits within a limited geographic area on non-ambulatory patients myeloma.uams.edu Ι 99 What role does my physician play? Your primary care physician will continue to direct your care. The Palliative Care Team members provide additional support and consultation to your primary care physician. Physicians and staff work together to provide the best care for you. As a patient, family member, or caregiver, if you are interested in the Palliative Care Team helping in your case, simply ask your doctor if he or she will order a palliative care consult. What are some of the other services the Palliative Care Team can provide? • Instruction on how to care for your loved one: how to give medications, how to prevent skin problems, how to recognize changes in the person’s condition • Arrangements for home support services and programs • Assistance with nursing home placement • Advice and help from nurses and physicians who are experienced and skilled in providing palliative care • Arrangements for hospice care • Providing you important information about the options and choices that are available • Pastoral care, guidance, and support to your belief system and values • Listening and giving you support How do I contact the Palliative Care Consult Service? Page the Palliative Care Coordinator at (501) 688-6222. If there is no answer, page the Chaplain on call at (501) 688-2060. myeloma.uams.edu Ι 100 What Are Advance Medical Directives? What Are Advance Medical Directives? UAMS would like you to know there are ways to let others know what decisions you would want to make about your medical treatments, even when you are unable to speak for yourself. There are two forms you can complete that will make your wishes known. A Durable Power of Attorney for Health Care and or a Living Will. These forms are known as Advance Directives. A Durable Power of Attorney for Health Care names a Health Care Agent to make medical decisions for you. This person will then be the legal medical decision maker for you if you cannot speak for yourself. A Living Will tells your physicians what you do and do not want concerning treatments if you become terminally ill and unable to speak for yourself or if you become permanently unconscious. Your Living Will may also allow your Health Care Agent to make decisions about life-sustaining treatments for you if you are unable to make these decisions for yourself. Every state makes its own laws concerning advance directives. In Arkansas, a Living Will only becomes effective if you are dying or permanently unconscious and you lose the ability to make and communicate your decisions. A Durable Power of Attorney for Health Care generally only allows your Health Care Agent to make medical decisions for you if you lose the ability to make and communicate your decisions. However, if you choose to do so, you may add specific language to the document to allow your Agent to make decisions for you even if you are still able to do so yourself. It is a good idea to have an Advance Directive since accidents and illness can strike at any time. It is your right to accept or refuse medical care, and an Advance Directive helps us follow your wishes and can protect you if you become mentally or physically unable to choose or tell someone your wishes. Deciding What You Want Thinking about end-of-life care can be emotional. Before completing either a Durable Power of Attorney for Health Care or a Living Will, it can be helpful to start by thinking about what is important to you. Then you can decide the level of care you would want. Advance Directives can help you protect your right to make medical choices, help your family avoid the stress of making hard decisions, and help your doctor by giving him or her guidelines for your care. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 101 Advance Medical Directives, continued (Page 2 of 7) Recording Your Wishes Once you know what kinds of medical care you may want, you can express and protect your wishes by putting them in writing. Types of Advance Directives: Living Will: A written document that explains your wishes for your healthcare if you have a terminal condition or become permanently unconscious Durable Power of Attorney for Healthcare: A written document that names a person to make healthcare decisions for you if you are unable to make and communicate decisions for yourself Taking Steps to Making Your Wishes Known There are four (4) basic steps to developing an Advance Directive. Each one is discussed below. Step 1: Clarifying What Is Important To You End-of-life decisions are actually decisions about how you want to live. Thinking about the questions below and talking about them with family and friends can be helpful: „„What do you fear most about being ill or injured? „„How much do you value being able to do things on your own? „„How much do you value physical activity? „„How would you feel if you could no longer do things that you currently enjoy? „„How important is it for you to be physically, mentally or financially independent? „„How would you feel about being cared for in a place other than your own home – for example, in a hospital or nursing home – at the end of your life? UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 102 Advance Medical Directives, continued (Page 3 of 7) Step 2: Learning about End-of-Life Treatments A Living Will can be written to explain what treatments you wish to have or those you wish to limit should you be unable to make and communicate decisions for yourself. Should decisions about lifesustaining measures have to be made, a Living Will, can help make sure your wishes are known. Some treatments to consider are: „„Cardiopulmonary Resuscitation (CPR) • Special measures used by doctors and nurses to restart the heart when it stops beating (This may include pushing on your chest, giving medicine, or using electrical shock.) „„Intravenous (IV) Therapy • Medications or fluids given through a tube placed in a vein „„Feeding Tubes (Artificial/Assisted Nutrition) • Using a tube that goes into your nose, belly, or intravenously (through a vein) to give food or liquid to patients who are unable to swallow on their own „„Ventilators (Artificial/Assisted Breathing) • Using a machine (a ventilator) to help you breathe or to breathe for you when you can’t Sometimes a ventilator can be used with a mask (which does not require a tube to be inserted in your body), but most times, patients require intubation (a tube inserted in your wind pipe or through a hole in your neck). The treatments listed above are not the only treatments that you might want to think about. Talk with your doctor about other types of treatments and the circumstances where these treatments would apply. Your Advance Directive can explain the treatments that you wish to be started, as well as those you wish to be withheld or stopped. You can even state that you would like a treatment to be started, but stopped at a later time if it is not helping you to recover. Step 3: Creating an Advance Directive „„Any competent (someone able to think clearly and understand) adult and any emancipated minor can create an Advance Directive. Parents can create Advance Directives for their minor children. „„You can be as specific as you want. You can create both a Living Will and a Durable Power of Attorney for Healthcare. „„Sign and date your Advance Directive. „„Advance Directives must either be notarized or witnessed by two competent adults. At least one of the witnesses cannot be related to you by blood, marriage or adoption, or entitled to any part of your estate. Neither witness can be the person you designate as your Health Care Agent. „„If you name your spouse as your Health Care Agent and later divorce or legally separate, your spouse will no longer be your Agent unless your Advance Directive specifically states otherwise. [Note: While state laws on Advance Directives may differ, if you have created a valid Advance Directive in another state, it will also be accepted in Arkansas.] UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 103 Advance Medical Directives, continued (Page 4 of 7) Step 4: Making Sure People Know about Your Advance Directive „„It is a good idea to keep a card in your wallet stating that you have Advance Directives and where to find them. „„Give your doctor a copy to be kept as part of your medical records. „„Give copies to relatives and friends who might be called in an emergency. „„If you use a Living Will, explain your reasons for your instructions to your doctor and your family and friends. Let them know why you do or do not want particular treatments at the end of life. „„If you designate a Health Care Agent to make healthcare decisions for you, be sure to give that person a copy and let him or her know why you do or do not want particular healthcare treatments. Review your Advance Directive regularly and make changes if needed. Tell your doctor, family, and friends about any changes you make. Some Questions and Answers about Advance Directives: 1. When will an Advance Directive be used? A Living Will only has authority to speak for you when you can’t or you are dying or permanently unconscious and will not get better. Unless otherwise specified, a Durable Power of Attorney for Health Care will only be used if you are unable to make and communicate decisions for yourself. This authority goes away as soon as you regain the ability to make decisions and speak for yourself. 2. Must a doctor follow my advance directive? Yes, your doctor must follow your Advance Directive. If he or she is unable to, then he or she is required to try and transfer your care to a doctor who can. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 104 Advance Medical Directives, continued (Page 5 of 7) 3. What if I change my mind? You can change or cancel your Advance Directive at any time, by telling us or writing it down. You can change who you want to be your Health Care Agent by making the change in writing or by completing a new Health Care Agent form. Make sure you tell your doctors, health care workers, hospital, and friends that your wishes have changed. Ask them to tear up and destroy old copies. 4. Are fluids and nutrition considered “life-sustaining treatments?” The short answer is “yes.” Fluids and nutrition (IVs and feeding tubes) are considered forms of lifesustaining treatments for the purpose of end-of-life decision making. What this means is that you (or your Health Care Agent) are allowed to request fluids and hydration be continued or stopped. Like any treatment decision, it is important not only to state what you want or don’t want, but why and under what conditions. Also, like any treatment decision, you can change your mind, so long as you clearly make your wishes known. 5. What role does my family play in making medical decisions? Family can play many important roles in health care decision making. You can involve any family member or friend in your health care decisions, but it is best to let your doctor and other health care workers know who is allowed to be told of your condition as well as what roles everyone is to perform. You can determine who (a family member or friend) should be a decision maker for you by assigning that person to be your Health Care Agent. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 105 Advance Medical Directives, continued (Page 6 of 7) 6. What if I don’t have an Advance Directive? If you do not have an Advance Directive, Arkansas law allows you to designate a Surrogate decision maker (someone who will make medical choices for you) by personally informing your physician verbally or in writing. A Surrogate may make healthcare decisions for you if you are unable to make and communicate decisions for yourself and you have not already appointed a Health Care Agent or your Health Care Agent is not available. A Surrogate will make healthcare decisions based on your wishes or based on the Surrogate’s determination of what is in your best interest. To help make sure your wishes are followed, it is best if you designate your own Health Care Agent or Surrogate. If you have not done so and you lose the ability to make and communicate decisions for yourself, Arkansas law allows your doctor to name a Surrogate decision maker on your behalf. The doctor will try to choose the best qualified person to serve as a Surrogate, considering: (1) The ability of the person to make decisions according to your wishes; (2) The frequency of contact with you before and during your illness; (3) The care and concern the person has exhibited for you; and (4) The person’s availability and willingness to serve as your Surrogate. The Surrogate does not have to be a relative, but consideration may be given in the following order: (1) Spouse (unless legally separated) (2) Adult child (3) Parent (4) Adult Sibling (5) Any other adult relative (6) Other adult caregiver or friend If your doctor chooses a Surrogate for you, the Surrogate can make most health care decisions for you, except decisions to withhold or stop artificial nutrition or hydration unless your physician and a second, independent physician certify that these treatments are only prolonging the act of dying and you are highly unlikely to regain the ability to make and communicate decisions for yourself. If there is no one eligible to serve as your Surrogate, your physician may make health care decisions for you in consultation with a hospital ethics committee or another independent physician who is not involved in your care. So, to make sure your wishes are followed, it is best for you to document them in an Advance Directive. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 myeloma.uams.edu Ι 106 Advance Medical Directives, continued (Page 7 of 7) 7. In an emergency, how will my Advance Directive be used? Remember: Living Wills are legally recognized only when you are permanently unconscious or dying and are unable to speak for yourself. In most cases, physicians need some time to determine whether or not you meet one of these two conditions. So, many treatments may be started in order to evaluate your condition, but these treatments can be stopped if it is determined that you meet one of the two conditions (permanently unconscious or terminally ill) and stopping treatment is what you would want according to your Living Will. This document is intended to provide you with information on how to complete Advance Directives. You can use the forms at the end of this document to create Advance Directives or to designate a Surrogate. This document is not intended to provide you with legal advice and is not a substitute for the advice of an attorney. UNIVERSITY OF ARKANSAS FOR MEDICAL SCIENCES 4301 West Markham Street - Little Rock, Arkansas 72205 Revised 11/15 myeloma.uams.edu Ι 107 myeloma.uams.edu Ι 108 myeloma.uams.edu Ι 109 myeloma.uams.edu Ι 110 myeloma.uams.edu Ι 111 myeloma.uams.edu Ι 112 Pharmacy Services The Pharmacy Department consists of the Hospital Pharmacy, the Outpatient Pharmacy, and the Winthrop P. Rockefeller Cancer Institute satellite. The primary function of the Hospital Pharmacy is to support the drug therapy of hospitalized patients. The outpatient pharmacy provides outpatient prescription services to UAMS ambulatory patients and to patients being discharged from UAMS Medical Center. The outpatient pharmacy is located on the first floor of the Outpatient Center building. Pharmacy Hours Hospital Pharmacy– Hospital Pharmacy is open continuously 24 hours each day for inpatients. A pharmacist is always on duty. Outpatient Pharmacy– Outpatient Pharmacy is open from 8:30 a.m. to 6 p.m., Monday through Friday. It is closed on Saturday, Sunday and holidays. Phone: (501) 686-5530 Pharmacists Pharmacists are available in the hospital on F7 and in the Myeloma Clinic to answer questions. Investigational Drug Use The approved protocol and a completed Patient Consent Form are a prerequisite to the use of an investigational drug. The principal investigator of the research protocol and the pre-designated associate investigators are the only physicians who may write orders for an investigational drug. Use of Homeopathic Therapies Always check with your physician, nurse, or pharmacist before using any homeopathic and/or herbal therapy. Use of Over-the-Counter (OTC) Medications Always check with your physician, nurse, or pharmacist before using any OTC medications. Many OTC medications contain aspirin or aspirin-like compounds (salicylates), acetaminophen, or ibuprofen. Salicylates and ibuprofen have an effect on the blood’s platelets and should be avoided unless prescribed by your physician. Look for the following ingredients on the labels of OTC medication products: • Salicylates – aspirin or aspirin-like compounds, acetylsalicylic acid, ASA, salicylamide, methyl salicylate, sodium salicylate, potassium salicylate, magnesium salicylate, etc. • Ibuprofen – IB, IBU, ibuprofen • Acetaminophen – APAP, paracetamol myeloma.uams.edu Ι 113 The following is a partial list of products containing salicylates, ibuprofen, and acetaminophen. There are many OTC products not on this list, so become familiar with how to recognize what is in the OTC medication that you consider taking. Aspirin or Aspirin-like Compounds • Alka-Seltzer (all products except for Effervescent Antacid) • Aspercreme • Ascriptin (all products) • Aspirin (all products) • BC Powder • Ben-Gay (all products except Warming Ice) • Doan’s (all products) • Ecotrin (all products ) • Empirin • Excedrin (all products) • Flex-All 454 • Icy Hot • Mentholatum (Deep Heating and Deep Heating Arthritis Formula) • Pepto-Bismol Acetaminophen • Acetaminophen • Actifed Plus • Anacin (all products) • Comtrex (all products) • Dristan • Drixoral Plus • Excedrin (all products) • Nyquil Nighttime Cold Medicine • Pamprin (all products) • Panadol, Children’s and Infant’s • Percogesic • Sinutab (all products) • Sominex Pain Relief Formula Tablets • TheraFlu • Tylenol (all products) Ibuprofen • Advil (all products) • Mediprin (all products) • Motrin IB • Nuprin myeloma.uams.edu Ι 114 Medication Journal Drug Name: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: myeloma.uams.edu Ι 115 Medication Journal Drug Name: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: myeloma.uams.edu Ι 116 Medication Journal Drug Name: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: myeloma.uams.edu Ι 117 Medication Journal Drug Name: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Dose: Time: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: Drug Name: Side Effects: myeloma.uams.edu Ι 118 My Treatment Journal ____________________________________________________ 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