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Autologous Bone Marrow and Stem Cell Transplantation For Multiple Myeloma, part 2
10.01.00
This is part 2 of the handbook. You can return to part 1, review the full document as a PDF (click on the PDF icon on the right), or request a free hard copy from the Foundation.

Questions and Answers About Bone Marrow and Stem Cell Transplantation

Listed below are some of the questions asked most often by people living with multiple myeloma and who have had or are considering a stem cell transplant. You should discuss these questions and other concerns with your doctor and members of your health care team before making any final decisions about how to treat your disease.

Q Why is a stem cell transplant necessary for a multiple myeloma patient?

A The transplant procedure allows you to receive treatment that would otherwise prove fatal. Typically, transplantation therapy involves extremely high doses of chemotherapy, with or without total body radiation therapy. This therapy is so potent that it destroys all your bone marrow. Without bone marrow, the body is unable to manufacture blood cells needed to carry oxygen and defend against infection. Therefore, a bone marrow or peripheral blood stem cell transplant replaces the destroyed marrow, rescuing the patient from the effects of high dose chemotherapy and/or radiation.

Q Am I a candidate for bone marrow or peripheral blood stem cell transplant?

A Medical experts have yet to arrive at a set of fixed guidelines for selecting patients who will benefit the most from a transplant. Increasingly accepted as a part of multiple myeloma treatment protocols, successful transplantation is a function of the patient's age, general physical condition, stage of disease, and responsiveness to prior treatments. Only your physician can provide you with the best assessment of your chances for long-term survival.

Q Does taking alkylating agents such as melphalan, busulphan, and cytoxan reduce my suitability for a transplant?

A Alkylating agents are one of the most effective ways of reducing tumor burden (tumor cells inside your body). However, their prolonged use - more than one year - will reduce your doctor's ability to easily harvest your stem cells. Therefore, if you're considering a transplant, you should talk with your doctor first about your total treatment plan to ensure that you have as many short term and long term treatment options available to you as possible. It should be emphasized, however, that collection should initially be done before using any alkylating agents.

Q How do I select a transplant center?

A A transplant is a complicated medical procedure that requires an expert team of doctors, nurses, social workers, psychologists, and allied health professionals who understand the procedure, have performed it successfully many times, and are equipped to respond when medical and emotional problems arise. Today, medical centers that meet these criteria can be found throughout the country. Many of these centers specialize in treating patients with many different types of cancer. To find the one best suited for patients with multiple myeloma, you should talk with your doctor, multiple myeloma patients, and the International Myeloma Foundation.

Q What goes on at a transplant center?

A To understand what goes on at a transplant center, we strongly suggest that you visit one. Meet with the staff - doctors, nurses and other members of the multiple myeloma treatment team - and learn more about how they approach a transplant. See the room where your transplant will occur and where you'll be spending your recuperation time. Find out what part of your procedure will be performed in a clinic or a doctor's office and what part will be done in the hospital. You should be comfortable with the center before you begin your transplant.

Q If my doctor agrees that bone marrow or peripheral blood stem cell transplant is an appropriate treatment for my disease, what can I do now to prepare for the experience?

A You can do a lot to get ready for your transplant. By reading this brochure, you've already taken the most important step: learning as much as you can about the procedure. Talk with your doctor, seek out fellow survivors, and read as much as you can, including the publications and newsletters from the International Myeloma Foundation. Ask questions about what you've learned and strive to read all the newest information coming from research. Bring a tape recorder or a friend with you to the doctor's office so that you can give your full attention to your doctor. Share what you know with your family and loved ones so that they will know what to expect - and how they can help you in the weeks and months ahead.

Your doctor will perform a series of tests to confirm that you are well enough to stand up to the trauma of a transplant. All the data gathered on the performance of your heart, lung, kidneys, and your other vital organs will enable your doctor to compare your health before and after the procedure. In most cases, you won't have to be hospitalized for these tests since they can be performed in your doctor's office.

Q What side effects should I anticipate from the transplant?

A Side effects can be expected from every type of medical treatment, even the use of aspirin. Each patient reacts differently to chemotherapy and other drugs they are given during the transplant. No two patients share exactly the same side effect profile.

Nonetheless, you should know that many multiple myeloma patients suffer from frequent bacterial infections. These infections can be life threatening. Drugs are available which stimulate the production of white blood cells that fight infections. Some patients develop leukemia, which prevent their body from producing life-saving bone marrow.

Q What happens during re-infusion?

A After chemotherapy and perhaps radiation therapy you will receive a re-infusion of your own bone marrow or stem cells. Your stem cells will be thawed. Once this is done, a health care provider will draw the liquid from the bags into a syringe, connect the syringe to your catheter and push the liquid into the catheter. While the re-infusion takes place you may feel warm or lightheaded. The chemical used to keep your bone marrow and stem cells fresh has a garlic smell that you might be able to taste. Your doctor may re-prescribe or adjust your medication to make you feel more comfortable during this procedure.

Q Can I die from the transplant itself?

A No surgical procedure is without risk, and a transplant for multiple myeloma patients is riskier than most. Nonetheless, medical studies have shown that 90-95% of all autologous transplanted patients survive transplant.

Q Can I relapse after a transplant?

A Yes. Unfortunately, the majority (at least 50%) of all multiple myeloma patients relapsed 18 to 36 months after their transplant was completed.

Q I've heard a lot about tumor purging? Can it help me?

A The process of purging removes tumor cells from peripheral blood or bone marrow taken from your body prior to transplant. High dose chemotherapy is used to kill tumor cells that are within your body. Stem cell selection is used to remove tumor cells from your autograft (bone marrow or peripheral blood stem cells removed from your body prior to the transplant). The goal of this strategy is to reduce the number of tumor cells both within your body as well as in the bone marrow or peripheral blood that will be reinfused back into you. Some experts believe that may extend the time to relapse. Your doctor can give you further guidance about whether purging is right for you.

Q How long will I stay in the hospital?

A You will stay in the hospital for about 2 weeks or less. The length of stay varies from patient to patient. Some patients may have several short admissions.

Q When will my stem cells start to grow again?

A Stem cells start to grow back or "engraft" within 12 - 15 days after re-infusion.

Q What will my quality of life be after transplant?

A On average, patients take three to six months to recover from a transplant. By this time, your immune system can once again fight infections because your bone marrow is producing healthy blood cells. Your hair will grow back, but your taste buds might still be a little quirky. Foods that tasted good to you before a transplant might not taste good now. However, in most 24 cases, you should be able to return to normal daily activities. It can take as long as a year to recover normal functioning. Remember to take one day at a time. You will have good days and bad days, and they won't necessarily come in that order. Prepare yourself to feel differently each day during the recovery process.

Q Should I expect changes in my emotions?

A Yes. Transplant is more than just a medical procedure. Because it forces you to rely on your doctor and other members of your treatment team as well as your family and friends, you will likely lose your sense of independence and control. Feelings of isolation and helplessness are common to transplant patients. You and your loved ones should seek assistance from a trained professional who has experience in counseling. Help may also be found through patient support groups.

Q What alternative and complementary therapies can I take during and after my transplant?

A Some patients believe that alternative and complimentary therapies are an important part of their treatment program. Because all drugs, synthetic and natural, interact creating unanticipated side effects, you should always consult with your doctor about their use. Be sure to tell your doctor the names of all the alternative and complimentary therapies you are using so that he or she can adjust your regimen accordingly. It is important to note that even seemingly innocuous over-the- counter drugs, e.g., ibuprofen, may be harmful to a myeloma patient.

Questions for Your Doctor:

These are questions we suggest you discuss with your doctor to help you better understand the transplant procedure and how it will affect your life. Space is provided for you to make notes:

"Am I a candidate for stem cell transplant?"

"What does high dose chemotherapy with transplant hope to achieve that can't be achieved by standard chemotherapy?"

"What treatment protocols are there at your institution and how do you decide which one is right for me?"

"Does taking alkylating agents such as melphalan, busulphan and cytoxan reduce my suitability for a transplant?"

"How do I select a transplant center?"

"How many transplants has this center performed for multiple myeloma and what are the success rates?"

"How long do patients transplanted in your center live after the transplant itself? How does this compare with national averages?"

"Will you be the doctor who performs the transplant and who are the other members of the team?"

"Will you be the doctor who provides my ongoing care?"

"What goes on at a transplant center?"

"If we decide that transplant is an appropriate treatment for my disease, what can I do now to prepare for the procedure?"

"When does the transplant procedure begin?" "What drugs will be prescribed for use before, during and after the transplant? What do they do and what are their side effects?

"Is total body irradiation (TBI) a part of the treatment plan? What are the pros and cons of this therapy?"

"How long is the entire treatment cycle, from preparation for the transplant to recovery?"

"How long will I have to be in the hospital? How often are my follow up visits going to be?"

"How will the transplant procedure effect my ability to function? How can I expect to feel during and after the transplant?"

"What side effects of my transplant should I anticipate?"

"What are the risks? Can I die from the transplant itself?"

"What is stem cell selection and will it be a part of my transplant procedure"

Support Services and Resource Guide for Patients and Families

This brochure is published by the International Myeloma Foundation.

International Myeloma Foundation

12650 Riverside Drive, Suite 206

North Hollywood, CA 91607-3421

U.S.A

(800) 452-CURE (2873)

(818) 487-7455

(818) 487-7454 Fax

E-Mail: TheIMF@myeloma.org

http://www.myeloma.org

The role of high dose chemotherapy with transplantation as a treatment option for myeloma patients is always included in the seminar agenda.

HOW CAN THE IMF HELP YOU?

(800) 452-CURE

The IMF Hotline, toll-free in the US and Canada, provides immediate support and information.

INTERNET ACCESS

At www.myeloma.org , you'll find 24-hour access to in-depth information about multiple myeloma as well as information about the IMF and our education and support programs.

28 INFORMATION PACKAGE

The IMF Info Pack provides comprehensive information on treatment options and disease management. Available free of charge, the Info Pack includes The IMF Patient Handbook and The IMF Concise Review of the Disease and Treatment Options as well as information on other IMF publications and services.

MYELOMA TODAY

Stay in the loop with this IMF newsletter that covers a broad range of topics, offering up-todate information of use to both patients and physicians. SUPPORT GROUPS

The IMF works with a network of more than 50 multiple myeloma support groups from around the world. To find the support group nearest you, contact the IMF. ONLINE MYELOMA FORUM The IMF Internet Discussion Group hosts an online support group where users can log on and share thoughts and experiences. Visit www.myeloma.org to access this forum.

PATIENT-TO-PATIENT DIRECTORY

The IMF maintains a confidential worldwide directory of patients and family members that can help put you in touch with IMFers in your area.

PATIENT & FAMILY SEMINARS

The IMF holds educational Patients & Family Seminars in cities around the world. These meetings enable patients and their families to learn about the latest developments in myeloma from a panel of world-renowned myeloma experts. The role of high dose chemotherapy with transplantation as a treatment option for myeloma patients is always included in the seminar agenda. The IMF Patient & Family Seminars are also a great opportunity to meet others touched by myeloma.

RESEARCH

The IMF research grant program, which funds both junior and senior investigators, is designed to increase the number of researchers working on a cure for myeloma. Created in memory of IMF founder Brian D. Novis, the grants support research into better treatment, management, prevention and ultimately, a cure for myeloma.

PHYSICIAN SERVICES

The IMF organizes Clinical Conferences, Expert Research Roundtables and Scientific Workshops to keep physicians and researchers abreast of advances in the field of myeloma. Several IMF programs offer Continuing Medical Education (CME) credit.

Other Groups

In addition to the IMF that can provide you with helpful information, The IMF applauds the efforts of these independent groups.

American Cancer Society

Patient Service Department
1559 Clifton Road NE
Atlanta, GA 30329-4251
(800) 227-2345
http://www.cancer.org

Bone Marrow Transplant Newsletter
1985 Spruce Avenue
Highland Park, IL 60035
(847) 831-1913
www.bmtnews.org

National Cancer Institute
Cancer Information Service
Building 31, Room 10A07
9000 Rockville Pike
Boy Scout Building, Room 340
Bethesda, MD 20892
(800) 422-6327

Glossary

Alkylating Agent - A chemotherapeutic agent such as melphalan (Alkeran) or cyclophosphamide (Cytoxan). Alkylating refers to the way in which these agents cross-link the DNA of myeloma cells and block cell division.

Anemia - A decrease in the normal number of red blood cells, usually below 10 G/dl with over 13 - 14 G/dl being normal. Myeloma in the bone marrow blocks red cell production causing anemia (shortness of breath, weakness and tiredness).

Antibodies - Proteins produced by white blood cells to fight infection and disease.

Apheresis - Sometimes called leukapheresis, apheresis is a procedure in which blood is taken from a donor and a portion of the blood containing plasma, white blood cells, and platelets is separated. Red blood cells are transfused back into the donor. The portion containing white blood cells contains the rare stem cells.

Autologous Bone Marrow Transplantation - A procedure in which a patient's bone marrow is collected, stored, and re-infused following highdose chemotherapy.

Autologous Peripheral Blood Transplantation - A procedure in which a patient's blood is collected by apheresis, stored, and re-infused following high-dose chemotherapy.

Beta 2 Microglobulin - A small protein found in the blood. High levels occur in patients with active myeloma. Low or normal levels occur in patients with early myeloma and/or inactive disease. Approximately 10% of patients have myeloma which does not produce beta 2 microglobulin. For these patients, beta 2 microglobulin testing cannot be used to monitor the disease. At the time of relapse, beta 2 microglobulin can increase before there is any change in the myeloma protein level. Therefore, 90% of the time, beta 2 testing is very useful for determining disease activity.

Bone Marrow Aspiration - The removal, by needle, of a sample of tissue from the bone marrow.

Creatinine - A small chemical compound normally excreted by the kidney. If the kidneys are damaged, the serum level of creatinine builds up resulting in elevated serum creatinine. The serum creatinine test is used to measure kidney function.

Colony-Stimulating Factor (CSF) - Proteins that stimulate the development and growth of blood cells. Filgrastim (Neupogen) is a colonystimulating factor that is used to mobilize stem cells from the bone marrow into the bloodstream prior to apheresis.

Engraftment - The process in which stem cells in the transplanted bone marrow or peripheral blood migrate to the patient's bone marrow and begin to grow and produce new white blood cells, red blood cells, and platelets

Hematopoiesis - The formation and development of blood cells in the bone marrow.

Immune System - The function of a number of related body organs that protect the body from disease organisms, other foreign bodies and cancers.

Lymphocytes - Small white blood cells produced in the lymphoid organs (the lymph nodes, spleen, thymus and tonsils), which are essential to normal function of the immune system.

Myeloablation - The killing of bone marrow by radiation or chemotherapy. This term usually refers to the complete or near-complete destruction of the bone marrow.

Neutropenia - A below-normal number of neutrophils. Neutropenia (low neutrophils) can be prevented or reduced using a synthetic hormone called GCSF (e.g. Neupogen).

Neutrophil - A type of white blood cell that functions to destroy bacteria. Neutrophils are necessary to combat bacterial infection. Neutrophils can drop to very low levels following chemotherapy.

Peripheral Blood Stem Cell (PBSC) - Stem cells collected from the blood. These cells are similar to stem cells found in the bone marrow. The term "peripheral" means that the cells come from blood outside of the marrow.

Platelets - Granule-containing cellular fragments critical for blood clotting and sealing off wounds. Platelets also contribute to the immune response.

Remission or Response - Remission and response are used interchangeably. Complete Remission (CR) is the common abbreviation for both. CR is the absence of myeloma protein from serum and/or urine by standard testing; absence of myeloma cells from the bone marrow and /or other areas of myeloma 34 involvement; clinical remission and improvement of other laboratory parameters to normal.

Stem Cell - Normal stem cells give rise to normal blood components, including red cells, white cells and platelets. Stem cells are normally located in the bone marrow and can be harvested for a transplant.

Stem Cell Selection - A cell processing technology that is used to obtain a stem cell enriched product and thereby reducing cancer cells in the transplant.

Total Body Irradiation (TBI) - A technique whereby radiation is administered to all bone marrow sites which may contain myeloma. Critical body organs (e.g. kidneys) are shielded with lead during the TBI procedure.

Transplantation - Stem cells are used to rescue the patient's blood-forming potential following a very high dose chemotherapy and/or radiation treatment. Transplant is not a treatment but a method of support to make high dose chemotherapy treatment possible.

White Blood Cell - One of the three major cell types in the blood. There are several types of white cells (i.e. neutrophils, lymphocytes and monocytes).

UNITED STATES OF AMERICA
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
U.S.A.
(800) 452-CURE
(818) 487-7455
(818) 487-7454 Fax
E-Mail: TheIMF@myeloma.org
Website: www.myeloma.org

UNITED KINGDOM
9 Gayfield Square
Edinburgh EH1-3NT
U.K.
0131-557-3332
0131-556-9720 Fax
E-Mail: TheIMF@myeloma.org.uk
Website: www.myeloma.org.uk

INTERNATIONAL MYELOMA FOUNDATION
This is part 2 of the handbook. You can return to part 1, review the full document as a PDF (click on the PDF icon on the right), or request a free hard copy from the Foundation.


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