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Resources

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

Steps Through the Transplant

The Medical Evaluation
Upon your arrival to the transplant center, you will often undergo a general medical evaluation involving a physical exam and some lab and diagnostic tests to make sure it is safe to go ahead with the transplant and to provide a baseline for future comparison. These tests may include an eye and dental exam, heart and lung studies, a bone marrow aspiration, a spinal tap, a chest x-ray, as well as other tests. In certain instances, these tests may reveal certain underlying problems which need to be taken care of prior to the transplant.

Signing Consent Forms
During this period you will also be required to sign one or more consent forms for the transplant procedure. The consent form is a legal document which ensures that your physician has informed you of serious medical complications that can occur during and after your transplant. Therefore, be forewarned, the consent form often lists some of the most frightening and unsavory complications that may arise from the transplant, even those that may be quite rare.

If you are having your transplant at a large research institution, you may be asked to participate in several research protocols. Remember that you are entitled to do what is best for you and have no obligation to participate in a research protocol or clinical trial if you feel hesitant about doing so. If you are undecided as to whether to participate, consulting a physician from a different institution can be helpful.

Central Line
Before your transplant, you will have a small, flexible plastic tube inserted into the large vein above the heart. This is called a central line, central venous catheter or Hickman catheter. The central line is a highly useful device that allows blood samples to be withdrawn and drugs and blood products to be given painlessly. The procedure for installing the central line generally requires local anesthesia. For many patients this is a relatively simple and painless procedure whereas others find it more painful and difficult:

I found the fear associated with waiting for the placement of the catheter much worse than the procedure itself. I don’t remember any part of the procedure and only had mild pain once the anesthesia wore off.

Bone Marrow or Stem Cell Collection
If you are having an autologous transplant, you will be your own donor and will have your own stem cells or bone marrow collected. If you are getting marrow from a donor, your donor will undergo the stem cell or bone marrow collection. Bone marrow contains a high concentration of stem cells--the cells that give rise to all the cells that make up your blood. A small number of these stem cells are also released into the blood stream. Stem cells can, therefore, be collected either directly from the bone marrow or they can be obtained from the blood stream.

Bone Marrow Harvest
If stem cells are collected from the bone marrow, you or the donor will have to undergo a surgical procedure in which a needle is inserted into the hip bone several times. Marrow rich in stem cells will be withdrawn and stored until the time of the transplant. During the time of the surgery, you or your donor will be anesthetized and will not feel any pain, although the area of the surgery may be sore for a few days following the procedure.

Peripheral Stem Cell Collection
Stem cells can also be collected from the blood stream. The stem cells in blood are called peripheral blood stem cells. Like stem cells inside bone marrow, peripheral blood stem cells are able to make red blood cells, white blood cells, and platelets. Since the blood stream only has a small number of stem cells, you or your donor will need to take a daily injection to increase the number of stem cells in your blood. Once there are enough stem cells, they will be collected by a process called apheresis. In this process, blood will be withdrawn from a central line and circulated through a cell separator. If your own stem cells are being collected, they will be stored until the time of transplant and given back to you. If stem cells are collected from a donor, the collection takes place the same day you receive the cells.

This process takes between three to four hours a day. Generally one to three days of pheresis are required to obtain an adequate number of stem cells for transplant.

Patients generally experience little, if any, discomfort during the pheresis procedure. Others experience numbness or tingling in their fingertips or toes, hand or leg cramps, lightheadedness, dizziness or chills. All of these are easily corrected.

One patient describes the experience as follows:

It was a walk in the park. They just hooked me up to the machines, fiddled a little here and there, and I didn’t feel a thing…Once I was hooked up, it was just fascinating to watch the blood being separated and the stem cells being taken out.

Conditioning (Chemotherapy Treatment and/or Radiation)
The next stage of the transplant is conditioning treatment (also called preparative regimen), which involves several days of chemotherapy with or without radiation. The type and amount of chemotherapy and/or radiation you receive depends upon your disease and the type of transplant you are having. Regardless of your exact treatment protocol, the goal of the conditioning treatment is to destroy all the cancerous cells in your body.

The chemotherapy is often given through your central line and, in some cases, orally. Generally you will not feel anything during the administration of chemotherapy, but will experience the side effects later.

Many people fear undergoing the radiation treatment. The treatment itself, however, is painless. If you are anxious about the treatment, you may consider using the following strategies:

During the radiation, I found it helpful to relax, breathe and imagine the radiation rays killing the cancer cells and not hurting other cells. I took music to the radiation room and pretended that it wasn’t happening and that I was somewhere else.

The effects of the conditioning treatment range from mild to severe. Common symptoms resulting from chemotherapy and radiation include nausea, vomiting, diarrhea, hair loss, fatigue, loss of appetite and mouth sores. Some people develop all of these conditions whereas others develop only a few of them. The conditioning treatment may also irritate the bladder and cause bleeding. Bladder irritation can be prevented by inserting a catheter through your urinary tract into your bladder and flushing out the bladder. Some people do not like the catheter, and should know that bladder irritation can be prevented through the simple administration of medication. If you prefer to take medication rather than to have a catheter, let your medical provider know.

The Transplant
The day of the transplant is an exciting day that offers a chance at new life. However, the procedure itself is surprisingly simple, and, the experience of actually getting the transplant is often described as being anti-climactic. A bag of bone marrow or peripheral stem cells is infused through your central line just like any other blood product or medication. The stem cells migrate through the bloodstream into your bones where they begin to reproduce, giving rise to all the cells that make up your blood:

The transplant was a second birthday, a second chance at life. Finally receiving the marrow of my donor was a tremendous relief. The transplant itself, however, was anti-climactic. A bag of blood was hung above my bed and infused over the course of several hours. A nurse monitored my temperature, pulse and blood pressure to make sure that it was all going ok.

Engraftment
Engraftment occurs when the newly infused cells begin to reproduce within your body. Often the first sign of engraftment is a rising white blood cell count. If you have had a peripheral stem cell transplant, engraftment will usually occur within 10-15 days post-transplant. If you have had a transplant with stem cells taken directly from the bone marrow, engraftment will usually take between 10 to 20 days. If you are someone who engrafts late, the waiting period can be trying and anxiety producing.

Throughout this period, your white count will be monitored carefully to check for signs of engraftment. Particular attention will be paid to your neutrophil count, also referred to as ANC (Absolute Neutrophil Count). Neutrophils, as mentioned earlier, are a common type of white blood cell which play an important role in fighting bacterial and yeast infections.

Many patients like to keep close track of their blood counts and keep a calendar in their room to mark off the days until engraftment. Celebrating the day of your engraftment with loved ones can be a good way to break the monotony of the hospital routine. Once your white count is above a certain level and you are free of infection and other complications, you can leave the hospital.

Back to Survivors' Guide Main page


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

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