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Survivors' Guide for Bone Marrow/Stem Cell Transplant
What to Expect and How to Get Through It

Overview of the Bone Marrow/Stem Cell Transplant

When I was first told that I would need a bone marrow/stem cell transplant (BMT), I mistakenly thought that I would have to undergo some kind of surgical procedure involving my bones. In fact, nothing of the sort happens. The transplant procedure itself is a simple procedure, similar to a blood transfusion, and does not involve any cutting or stitching. In a transplant, high dose chemotherapy and, in some cases, radiation, is used to destroy cancerous or diseased cells in the body. In accomplishing this goal, the treatment also destroys a person’s bone marrow, the site where stem cells are produced. Stem cells are the cells that give rise to the rest of blood cells. In order to restore the ability to make blood cells, a person must be given healthy stem cells to replace the stem cells in the marrow that were destroyed.

The bone marrow/stem cell transplant procedure was originally developed in the late 60’s to treat cancers and diseases of the bone marrow. The idea was to destroy the diseased bone marrow with chemotherapy and radiation and then to replace it with a donor’s healthy marrow. Since then the procedure has been refined and has been expanded to treat many other conditions, including cancers and diseases that do not involve the bone marrow. In the last few years, for example, transplants have sometimes been used to treat testicular and other solid tumors. In these cases, when the stem cells in the bone marrow are healthy, a person does not need to receive stem cells from a donor, but can use his or her own stem cells for the procedure. The type of transplant you will have depends on whether you use your own stem cells or the cells of a donor to replace stem cells destroyed by chemotherapy and/or radiation. Before undergoing transplantation, it is also important to look into some of the new and promising treatments that are under investigation.

One new development is a procedure called non-myeloblative stem cell transplant, also referred to as a mini-transplant. As a result patients undergoing this type of transplant have far fewer side effects and do not experience the typical hair loss, mouth sores and other symptoms that are characteristic of conventional transplants. If further study proves promising, this type of minitransplant may become more widely available. The mini-transplant and the experiences of those undergoing mini-transplants are not discussed in this guide. However, more information about this procedure can be obtained by calling the National Bone Marrow Transplant Link, which is listed in the Resource Listing. The development of new drugs such as STI 571, also known as Gleevec, may make it possible for individuals with Chronic Myelogenous Leukemia to avoid undergoing a transplant altogether. At the time of this writing, Gleevec is being tested to determine its effectiveness in treating a number of different diseases. Before deciding to undergo a bone marrow/stem cell transplant, make sure to inform yourself about treatment options and alternatives, get a second opinion, weigh the benefits and risks of each treatment and then, armed with information, make the choice that is going to be best for your situation.

Autologous Transplant
In an autologous transplant, one’s own healthy stem cells are removed and stored until the time of the transplant. Chemotherapy and, in some cases, radiation is then administered to destroy the diseased cells in the body. This treatment also destroys the stem cells in the bone marrow. The stem cells that were removed and stored before the treatment are returned to the patient at the time of the transplant to replace the stem cells that were destroyed.

Usually autologous transplants are done when the bone marrow is healthy and the disease lies elsewhere in the body. In some instances, however, autologous transplants are done even when the bone marrow is diseased. When this is the case, the bone marrow that is removed may be treated or purged to clear out cancer cells. Currently BMT centers across the country use different methods to purge marrow. It will be up to you and your physician to decide how your marrow will be treated if it needs to be purged.

Allogeneic Transplant
When a person cannot be his or her own donor and the stem cells need to be taken from someone else, the transplant is called an allogeneic transplant. If the donor is a relative, the transplant is called a related allogeneic transplant. If it is from an unrelated donor, it is referred to as an unrelated allogeneic transplant. To find a donor, you will need to have your blood tested and tissuetyped (not the same as blood type) so that it can be compared and matched to blood samples of potential donors. This is done through a test called the human leukocyte antigens (HLA) test which examines certain antigens or proteins on the surface of your white blood cells. These antigens serve as a kind of “fingerprint” and play an important role in the body’s ability to distinguish between “self” and “other”. There are several pairs of antigens that are considered important in determining the degree of fit between you and your donor. If you match your donor on these important sites, there is a good chance that your new stem cells will recognize you as self and will function effectively in your body. If you do not match your donor on these sites, the donor’s stem cells may recognize certain organs or tissues in your body as foreign and may attack them. This is called graft versus host disease (GVHD). The more closely matched you are to your donor, the less likely you are to get GVHD.

Syngeneic Transplant
In a syngeneic transplant, the donor is an identical twin and the stem cells will be genetically identical to the stem cells that will be destroyed by the chemotherapy and/or radiation. In these cases, as in an autologous transplant, the patient does not get GVHD because the new stem cells are identical to the marrow that is destroyed.

The length of time you will spend in the hospital will depend in part on the type of transplant that you have and the hospital where you are receiving your care. Nowadays many autologous and some allogeneic transplants are done on an outpatient basis. In some cases, however, autologous transplants may require a two to three week hospital stay and allogeneic transplants may require a hospital stay of three to five weeks or longer, depending on your condition and the specific procedures followed at your transplant center.

What is Bone Marrow?
Bone marrow is the spongy center of your bones where blood is produced. It is also the home of your immune system. Bone marrow contains the parent cells, called stem cells, that later mature into white blood cells (infection fighting cells), red blood cells (oxygen carrying cells) and platelets which aid in blood clotting. The numbers of your blood cells will be closely monitored throughout the transplant process. As your transplanted stem cells begin to produce blood cells, your blood counts will begin to rise and you will begin to regain your immunity, strength and energy.

White blood cells or leukocytes are cells which fight infection and comprise an important part of your immune system. When your white count is low, you are at greatest risk for infection. During the transplant, your white count will be carefully monitored. Neutrophils are a common type of white cell which play an important role in fighting infection. During the transplant, your medical team will be closely monitoring your neutrophil count, which is also referred to as your ANC (Absolute Neutrophil Count).

Red blood cells or erythrocytes make up about 45% of the volume of the blood in a healthy individual. Their function is to carry oxygen from the lungs to the rest of the body. Red blood cells transport oxygen on a molecule called hemoglobin. During the transplant, your hemoglobin levels will be monitored in order to determine your red blood cell level. If your hemoglobin falls below a certain level, you will need a red blood cell transfusion.

Platelets are essential in the process of clotting, thus preventing excess bleeding and bruising. When your platelet count is low, your risk of bleeding is high. Your platelets will therefore also be monitored to assess your risk of bleeding and to determine when a platelet transfusion is needed. Once the stem cells in the bone marrow are destroyed by the chemotherapy and/or radiation treatment, you will no longer be able to produce life-sustaining blood cells unless you receive new stem cells to replace those that were destroyed. The stem cells will be taken either from you or from your donor and will be given to you once the chemotherapy/radiation is completed.

Methods of Stem Cell Collection
Stem cells, which are produced in the bone marrow, can be collected in a variety of different methods. Traditionally stem cells were collected from a large bone such as the hip bone. In this procedure, known as a bone marrow harvest, a needle is inserted into the marrow space of a large bone and stem cells are removed directly from the bone marrow. In the last few years, peripheral blood stem cell (PBSC) transplants have become more common. In this case, the patient or donor donates stem cells that are collected from the circulating blood stream instead of from the bone. The collection of stem cells from the blood is done through a process called apheresis. In some cases, stem cells are collected from the placenta and the umbilical cord of a newborn baby. This is known as an umbilical cord blood transplant. Interestingly, this type of cord blood transplant poses a lower risk of graft versus host disease (GVHD) than other forms of transplantation when the stem cells are collected from the bone marrow or the peripheral blood.

T-Lymphocyte Depletion
In some cases, the stem cells that are collected undergo a process known as T-lymphocyte depletion. In this process, T-lymphocytes, a type of white blood cell, are removed from the stem cells before they are given to the patient. This is done to reduce the incidence of graft versus host disease (GVHD), which is caused by the new immune system attacking healthy cells in the patient because it does not recognize the patient as “self”. Removing the T-cells makes it less likely that the new immune system will mount an attack against the patient. However, T-lymphocytes are also beneficial as they help the donated stem cells take hold or engraft, and they also play a role in reducing the risk of relapse. Although T-lymphocytes pose a risk to the patient because they attack healthy cells (GVHD), they also attack residual cancer cells in a process known as graft versus leukemia effect, thus reducing the risk of relapse.

There is significant additional information about the medical aspects of the transplant process. Some excellent sources of information are listed in the Resource Listing at the end of the guide. Here, my intention has been to provide only a brief overview of the medical aspects of the transplant process and to focus on the experiences and recommendations of survivors as they progress through the transplant. My hope is that by hearing their voices, you will feel less isolated in your journey and be able to utilize some of the coping tools and recommendations of those who have taken this path before you.

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Table of Contents

Acknowledgments

Foreword

Overview of the Bone Marrow/Stem Cell Transplant

Emotional Preparation

Physical Preparation

Practical Preparations

Moving to the Transplant Center

Steps Through the Transplant

Physical Effects of the Transplant Process

Coping Emotionally

Caring for Yourself During Hospital Stay

Planning to Go Home

The Transition Home

Outpatient Care Post-Transplant

Readmission and Setbacks

Guidelines Post-Transplant

Caring for Yourself Post-Transplant

Recovery

Recommendations for Coping During Recovery

Beyond the Transplant

The Journey Ahead

Resource Listing

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