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Managing Long-Term Effects of Transplant

After a bone marrow or cord blood transplant (also called a BMT) your recovery will take many months. By one year after transplant, many transplant survivors are able to take part in their usual activities, such as work or school. Most say they have a good quality of life, maybe even better than before their transplant. They say they have a greater appreciation for the good things in life and find joy in each day.

On the other hand, most survivors have some long-term effects or complications from their transplant. Some of these go away over time. Others are permanent. Some are fairly easy to manage, but other long-term effects are serious or painful. You cannot control whether you will have these long-term effects, but you can take steps to deal with them.

You can also view presentations about managing many of these effects from our June 2007 survivor's conference: see the Living Now conference presentations.

Recommended tests after transplant

Scheduled tests can help detect problems early so that they can be properly treated. For guidelines to help you and your doctor schedule your long-term follow-up care after transplant, see A Guide to Protecting Your Health after Transplant: Recommended Tests and Procedures. Download the guide from the NMDP’s research partner, the Center for International Blood and Marrow Transplant Research at www.cibmtr.org/posttransplant.

Chronic GVHD

Graft-versus-host disease (GVHD) is a common complication after an allogeneic transplant (which uses cells from a family member, unrelated donor or cord blood unit). GVHD that develops in the first 100 days after transplant is called acute GVHD. GVHD that develops anytime during or after the third month post transplant is called chronic GVHD. Chronic GVHD may last for months, years or a lifetime. It can range from mild to life-threatening. For a full discussion of GVHD and how it is treated, see Graft-Versus-Host Disease.

Fatigue

Fatigue (tiredness) is the most common long-term effect of a bone marrow or cord blood transplant. In the first months after your transplant, you can expect to feel tired much of the time. Over time, you will gain more energy. However, fatigue may still be a limitation. Some transplant survivors say they never have as much energy as they did before their transplant, but most can manage their fatigue. They are able to do the things they need and want to do. Some tips for managing fatigue include:

Get enough rest. Even years later, you may need more rest than you did before your transplant.
Be as active as you can. Get exercise and do the things you like to do. Exercise can give you more energy, as long as you do not overdo it. Learn what level of exercise makes you feel good.
Pay attention to whether there are some times of day when you have more energy than others. Use those times to do the things that matter most to you.
Learn to pace yourself and balance activities with rest. You may not be able to do as much in one day as you could before your transplant. You can still get a lot done over time.
If you can, delegate tasks that are hard for you to do or make you tired.
If your fatigue gets worse, talk to your doctor. Your doctor will look for a cause for the change and treat it, if possible.

Memory and concentration problems

Many people who have received chemotherapy say they have problems with short-term memory or problems concentrating. For most people, this effect is not serious enough to keep them from doing well in their job or in classes. Many have found some of the following tips helpful:

Carry a small notebook and write down things you want to remember. Make lists for yourself.
Put up reminder notes where you will see them. This works best if you only have a few important notes. If you have notes everywhere, you may ignore them.
Repeat things you want to remember, such as names. Repeating something out loud or in your mind can help you remember it.
Practice saying key information you want to remember for an event. For example, if you want to make a point in a meeting, practice it beforehand.

Infertility

Most people who have a bone marrow or cord blood transplant become infertile as a result of their treatment. Depending on your age and circumstances, this may be a hard side effect to accept.

You should be aware not all transplant survivors become infertile. The likelihood can depend on your age and the details of your treatment. Some transplant survivors have gone on to have children. If you and your partner do not want to have a child, you should take steps to avoid a pregnancy.

If you want to have children after your transplant, there are some options you may be able to explore.

If you are a man, before your transplant, you may be able to have some of your sperm frozen. Talk to your doctor about your options before your transplant.
If you are a woman, before your transplant, you may be able to have your eggs frozen or have embryos frozen. However, this can take a month or more. These tactics are not an option for everyone and do not always work. Talk to your doctor about your options before your transplant.
Some couples are able to conceive a child using donated sperm or donated eggs.
You may be able to adopt a child. However, some traditional adoption agencies may hesitate to work with you because you have been treated for a life-threatening illness. Another option may be to work with an attorney who specializes in arranging private adoptions.

One resource for more information about your options is the non-profit organization Fertile Hope — visit their Web site at www.fertilehope.org. Fertile Hope provides information and support to cancer patients whose treatment may cause infertility.

Other long-term effects

There are other side effects of a bone marrow or cord blood transplant that some patients experience. Some of these side effects can appear years after the transplant.

Thyroid problems

Some transplant survivors who had total body irradiation (TBI) can get hypothyroidism or other thyroid problems. The symptoms of hypothyroidism include fatigue, weight gain and depression. If you develop hypothyroidism, treatment with thyroid hormone can help. Thyroid problems are more common in children than adults.

Risk of secondary cancers

Chemotherapy and radiation therapy both increase a person's risk of getting another kind of cancer later. People who had total body irradiation (TBI) or get chronic GVHD have an even higher risk. You and your doctor must watch for signs of a new cancer. The most common sites for cancer after transplant are the skin and mouth, but other kinds of cancer also occur. Several large studies have found that a transplant survivor is about 3 to 13 times more likely to get cancer than the average person. This risk is much higher for children than for adults. The risk of getting a second cancer increases the longer you live. (The risk of getting some kinds of cancer increases with age for other people as well.)

Cataracts

Some transplant survivors develop cataracts (a clouding of the lens in your eye) about three to four years after transplant. Cataracts are common in survivors who were given total body irradiation (TBI) or who were given steroids (used to treat GVHD) for a long time. Cataracts can be removed in outpatient surgery when they begin to cause problems with your vision.

Numbness and tingling in the hands and feet

Numbness and tingling in the hands and feet is called peripheral neuropathy. It can be a side effect of some kinds of chemotherapy used before transplant. The numbness and tingling may get better over time, but it may never go away completely. It may also get worse over time. Talk with your doctor about treatments that could help.

Sexual problems

Many transplant survivors have some sexual problems, such as loss of interest in sex or pain during sex. For more information about dealing with sexual problems after transplant, see Managing Relationships with Family & Friends.

Feelings of depression, anger or guilt

For information about dealing with depression, anger, guilt or other feelings after transplant, see Dealing with Changing Emotions.

The long-term effects described here are some of the most common faced by transplant survivors, but this is not a complete list. You could have other long-term effects. It is important for you to get regular follow-up care from your doctor. Tell your doctor about any new symptoms you have, so your doctor can treat any problems and help you manage them.

The tips on this Web page are general recommendations. They are not intended to replace, and should not replace, your own doctor's advice. Your doctor will give you recommendations based on your own particular situation. If you have questions, talk to your doctor.