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

Physical Effects of the Transplant Process

The transplant process is characterized by tremendous change. In response to the chemotherapy, radiation and medications, your body will undergo many transformations. The changes will affect how you look, your energy level and strength as well as the functioning of different organs in your body.

Throughout the process, your blood counts and health status will be monitored carefully. Your weight will be checked daily and your vital signs—temperature, blood pressure and pulse—will be checked every few hours. Often you will be given a diary to record the fluids and food you take in by mouth and your output as urine, vomit and stool. This close monitoring of your condition is necessary to ensure that any changes in your health status are detected and treated as early as possible.

Nausea
Nausea is a very common side effect which can range from moderate nausea for several days to severe nausea over the course of several weeks or even months. Fortunately there are some very effective medications for nausea. Some nausea medications may make you sleepy or cause hallucinations. If this is the case, or your medications are not reducing the nausea effectively, make sure to explore different options with your medical staff. You may also try relaxation or meditation to decrease nausea. Here are the accounts of two different patients: On a physical level [the conditioning] made me puke every day for four weeks. I did not eat any food for that time. I got an infection and a fever of 105.8 and went to intensive care for three days. The doctors removed my chest catheter and put one in my neck--Yuck!

After four days of throwing up intermittently, I felt much better--although I was somewhat nauseated after meals. Ativan and Benadryl made me hallucinate terribly, so I switched to Marinol, which made me fully sane again and was highly effective in reducing my nausea. I was one of the few lucky ones who pretty much ate throughout the transplant.

Tips to Reduce Nausea

• Wear loose fitting comfortable clothes.
• Avoid overly sweet and greasy foods as they may increase your discomfort.
• Eat salty dry foods like crackers.
• Find ways to distract yourself with activities you enjoy.
• Practice relaxation and deep breathing techniques.
• Eat and drink small quantities throughout the day.
• Eat and drink slowly so that only small amounts of food enter your stomach at one time.
• Rest in a chair after eating and keep head elevated.
• Avoid eating very hot or very cold foods.
• Take anti-nausea medication regularly before the onset of nausea. Prevention is key!
• Avoid foods and smells you find unappealing.
• Refrain from eating your favorite foods during the period you are most nauseated as you may develop an aversion to these foods later on.

Mouth Sores
The conditioning regimens of chemotherapy and radiation often cause the tissues inside your mouth to become thinner and more delicate, leading to irritation and ulceration. In some cases, the whole digestive tract may become irritated and painful. The extent of irritation will depend in large part on the type of treatment you receive and on your own unique reaction to the treatment. Many individuals experience changes in their sense of taste during the transplant or dry mouth, which may make it more difficult to eat. If you are experiencing painful mouth sores, physicians who specialize in pain management, psychologists and psychiatrists may be available to help you cope with pain and stress. As always, make sure to make your needs known. It is also helpful to keep in mind that the pain is transient and will subside once you engraft and have a better functioning immune system. Here are two accounts from different patients: I had a transplant from an unrelated donor, and despite all the warnings from doctors about the terrible pain I would get from mouth sores, I developed very few sores and only had pain for a day or two. It was much easier than I expected.

The pain in my mouth was the most acute physical suffering I encountered, but I knew it was for a limited amount of time. That helped.

Energy Depletion
The transplant procedure will tend to make you feel weak. Don’t be surprised if you can only accomplish a limited number of activities during the day. Simple tasks like reading or writing a letter may seem very taxing at times. Patients have described their experience as follows: Chemo that made me sick for seven days, 24 hours a day is memorable... . 1200 rads of total body irradiation (TBI) was no picnic. It was like an energy-zapping ray gun from an old ’60’s movie ... .

I almost had to learn how to walk again because I was so weak. This was emotionally taxing me because it was so hard to do things that were so easy for me before the transplant.

The chemotherapy didn’t make me as sick as I thought it would. I didn’t get as horribly tired as I had thought I would, except for a few days. My recovery, except for my blood counts, was quicker than I had thought it would be.

During the transplant, I withdrew emotionally from everyone. I pretty much stopped talking, wouldn’t take my telephone calls, or even read my mail. I really had nothing to say. It took all my energy to just keep putting one foot in front of the other to get through that tunnel. The only thing that helped me cope was just my mother’s presence.

When I was too tired to read, listening to books on tape was a great way to pass the time.

Body Image
Coping with a changing body is an integral part of the bone marrow/stem cell transplant. You may begin the transplant with lots of hair on your head and will then lose most or all of it. Some people lose their eyebrows and eyelashes whereas others don’t. If you take certain immuno-suppressive drugs, your face, abdomen, hands and feet may become swollen and round for some time. Weight can fluctuate during the transplant. Although many people experience weight loss during the transplant, others gain weight due to water retention and bloating. As you go through the transplant process other changes may take place. Once your hair starts coming back in, it may be a different texture or color than it was before. Medications, such as Cyclosporine, which is commonly used to treat graft versus host disease (GVHD) may cause additional hair growth. After your initial bald state, you may find that your hair, eyebrows, and eyelashes are thicker than ever. Some patients may grow additional body and facial hair. Here are two different perspectives: One of the most difficult aspects of the transplant for me was having a lot of facial hair. I felt so unattractive, self-conscious and ugly.

I was amazed to find that I actually thought I was prettier bald than with hair! Once it started coming in, it was less attractive because it came in unevenly. I was horrified that it would stay that way. But it has come back thicker than ever--and curly too!

As you go through these transformations, remember to have a sense of humor. Suggestions by other patients include getting a funny haircut before your hair falls out, buying hats or wigs you like, marveling at the changes, remembering to laugh at yourself and keeping in mind that the changes are almost always temporary. Adjusting to a new and perpetually changing self may be difficult but it is helpful to remember that it is part of the necessary process you must undergo in order to recover and regain your health.

Graft Versus Host Disease (GVHD)--Allogeneic Transplant Patients
As your white count rises, you may experience graft versus host disease (GVHD). Graft versus host disease occurs when the white cells produced by your donor’s transplanted cells do not recognize your organs and tissues as “self”. This happens because there are some genetic differences between you and your donor. Because of these differences, your new immune system may identify your cells as foreign and will attack them. Patients getting an autologous transplant or getting a transplant from an identical twin do not get graft versus host disease. About half of the patients receiving a transplant from a related donor will develop some form of GVHD. Your chances of getting GVHD are higher if your donor is unrelated.

GVHD manifests itself in two forms: acute GVHD which develops in the first three months post-transplant, and chronic GVHD which develops any time after that. Acute GVHD primarily affects the skin, the digestive tract and the liver and can cause symptoms ranging from mild skin rashes that come and go to stomach pains, nausea, cramping of the intestines and diarrhea. In more serious cases, GVHD can affect major body organs and can be life-threatening. Acute GVHD may resolve itself with treatment or, in some cases, it merges with the onset of chronic GVHD.

The effects of chronic GVHD include dry eyes, dry mouth, skin and joint problems or problems with organs such as the liver or lungs. The severity of GVHD varies dramatically from patient to patient, as does its time of onset and its duration. Some patients who receive marrow from a donor experience no GVHD whereas others experience extensive GVHD.

A variety of methods are used to prevent or reduce the incidence of GVHD. Patients receive immuno-suppressive drugs which weaken the immune system, thus reducing the severity of the attack on vital organs. Unfortunately, they also increase susceptibility to infections and prolong the period of immunosuppression. These drugs may also affect one’s emotional and mental state. While on these drugs, some patients experience drug induced depression, confusion, anxiety, roller coaster-like mood swings, and exaggerated feelings of anger or excitement. It is helpful to keep in mind that these effects are temporary and that many people do not experience these side effects.

Some BMT centers reduce the incidence of GVHD through the use of T-cell depletion. In this procedure some or all of the T-cells of the donor’s marrow are removed, thus limiting the ability of the new immune system to orchestrate an attack on the host (the patient).

Other Changes
The following section highlights some of the experiences of different transplant patients. Keep in mind that not everyone goes through these changes. I have chosen to include the following experiences of survivors, as I think that it is useful to hear what others have been through, and to know that even despite the most difficult circumstances, people make it through, recover and return to normal active lives post-transplant: It was months before I could sleep more than an hour at a time without getting up to pace the floor because of restlessness.

I needed a lot more sleep than usual and would take a three or four hour nap every day in the afternoon and would sleep like a log through the night. I was told that I might have trouble concentrating on reading though I am an avid reader. It was true. I couldn’t really read a book until two months after the transplant.

In general, restoring my digestive system to normal was the biggest physical challenge I faced. After the transplant, it was six months before I ate a normal meal in company, and even then I had to be very careful of what I ate. It was very traumatizing to lose control of my hands to violent trembling because of medication. My handwriting was almost indecipherable for several weeks, but gradually returned to normal.

Boredom was a serious emotional challenge. I frequently lay awake at night just listening to the sounds of my monitors. It was easy to become somewhat apathetic and depressed because of the routine nature of the days going by. My memory while in the hospital was very bad. I still don’t remember some of the things that I did or that happened while there.

My taste buds were off so everything tasted like cardboard.

I was unable to take food for a few days and an anal fissure that I had prior to the transplant was severely aggravated by repeated bouts of diarrhea. I also lost some weight both during and for six months after the transplant. I got terrible hemorrhoids and had to sit on a pillow for about ten days. I suffered from diarrhea for about a week.

I had constant diarrhea which was the most debilitating effect and continued for eight months or more. I also vomited frequently. I still don’t know how I coped with that. Just made sure I was near a bathroom, I guess

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