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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Follow-up Care

Even if you are healthy, it is important that your doctor be made aware of the recommended guidelines for follow-up care. Complications from a transplant can happen many years afterwards. It is possible that you will never develop any of the long-term side effects of the transplant. However, routine testing is important so that potential problems are caught early when treatment is more likely to be effective. In addition to maintaining a healthy lifestyle and getting the routine check-ups that are recommended for the general population, transplant survivors need to do additional monitoring and screening.

If you are experiencing symptoms that you think might be related to your transplant, it is important to be seen by a specialist who is aware of the late effects of transplants and the most promising treatments. This may mean making an appointment with your BMT specialist, or, in some cases, if your symptoms do not resolve, seeing a specialist at one of the larger transplant centers where physicians are knowledgeable about long-term survivorship issues and up-to-date on cutting-edge treatments. Being proactive is a very important step in getting the treatment you need.

To date, there is no one clearinghouse for information regarding long-term survivorship centers. However, there are some good resources on transplant-specific care including the National Marrow Donor Program (www.marrow.org). The National Bone Marrow Transplant Link (800-546-5268) can also provide assistance in locating a survivorship center near you. Other sources of information that are not transplantspecific, but which can help you locate well-regarded cancer centers, include the National Comprehensive Cancer Network (www.nccn.org/members/network.asp) and the National Coalition for Cancer Survivorship (www.canceradvocacy.org).

To find institutions that are tailored to meet the needs of transplant survivors, you can also do an Internet search using terms such as “bone marrow transplant” or “stem cell transplant” and “survivorship center.” Depending on your needs, you may also want to search for a chronic GVHD comprehensive evaluation program or a clinical trial in chronic GVHD.

The following sections provide some general recommendations for long-term transplant survivors. Your physician may have additional recommendations that are specific to your needs. More detailed guidelines for follow-up care are summarized in two helpful guides, A Guide to Protecting Your Health After Transplant, Recommended Tests and Procedures (Autologous) and A Guide to Protecting Your Health After Transplant, Recommended Tests and Procedures (Allogeneic). These were produced by the Consumer Advocacy Committee of the CIBMTR based on guidelines developed by the large transplant societies, ASBMT, CIBMTR, and EBMT. These guides also include a handout for your primary care physician entitled “Recommended Screening and Preventive Practices for Post-Transplant Patients.” You may obtain your free copy by calling 866-647-7750 or by visiting the CIBMTR’s website (www.cibmtr.org).

Cancer and Disease Prevention

Supplement the routine screenings at your doctor’s office with self-exams at home. Note any changes in your skin, sores or symptoms that do not heal by themselves, or any lumps in your breasts or testes. Discuss your symptoms or changes in your health or energy level with your doctor.

You can do all the things recommended to the general public for disease prevention: Choose a healthy lifestyle. Invest time in developing and maintaining close friendships and a strong social support network. Avoid tobacco and excessive exposure to the sun. Wear a hat, long-sleeved shirt and full-length pants, and use sunscreen on areas of the body that are directly exposed to the sun, particularly your face and neck. Incorporate exercise and a healthy diet into your daily lifestyle.

Routine Care

Visit your doctor every year or as required for a complete history and physical examination, which could include:

  • Blood tests (complete blood count, glucose level, lipid levels, BUN/creatinine testing, etc.)
  • Thyroid hormone levels
  • Test for blood in stool
  • Cardiovascular risk assessment (blood pressure, cholesterol, etc.)
  • Clinical pulmonary (lung) assessment
  • Women: Pap smear and mammogram based on current guidelines and in consultation with your doctor, monthly breast self-exam. If you are taking estrogen or progesterone, review the benefits and risks with your gynecologist.
  • Men: Annual prostate exam over the age of 45 and testes self-exam
  • Regular skin self-exam; notify your doctor of any changes or unusual symptoms
  • Discussion of sexual function, noting changes or problems • Annual flu vaccine
  • Screening colonoscopy starting at age 50, or if there is a family history of colon cancer, 10 years before the age your close family relative was diagnosed with colon cancer. Follow-up based on doctor’s recommendations.

Dental

Have a dental exam and cleaning every six months. If you have mouth GVHD or are immunocompromised, you may need to take antibiotics prior to dental work to reduce your chance of infection. Consult with your transplant center or dentist regarding appropriate guidelines. Make sure that your dentist screens you for mouth cancer.

Eyes

Have an eye exam annually to check for cataracts or problems resulting from GVHD. If you have GVHD or are on immunosuppression, get a Schirmer’s test to measure tear production. Take along your medication list, as some medicines can affect eye health.

Special Tests
Pulmonary (Lung) Function Test

This should be done one year post transplant and then again five years post transplant. If tests are abnormal, if you have symptoms, or are being treated for chronic GVHD, you may need to have additional pulmonary lung function tests.

Vaccinations

Childhood immunizations should be done after transplantation, usually at one year post transplant. However, your timing might be different depending on your immune recovery. Live vaccines for diseases such as measles, mumps, and rubella should be given only after you have been off immunosuppressive treatment for a year or more. Vaccines, such as the pneumococcal vaccine, which is derived from the dead form of the bacteria, can be given regardless of your immune status. Consult your BMT team for the most up-to-date recommendations, as there may be requirements to receive seasonal vaccines (flu shots, H1N1 or “swine flu”). Consult a travel clinic for preventive recommendations if you plan to travel abroad.

Hepatitis C Virus

You should get tested at some point after the transplant for the hepatitis C virus, particularly if you had transfusions before 1991.

Chronic Myeloid Leukemia (CML)

Patients who had CML prior to their transplant should get a blood test annually to be screened for the presence of leukemia cells.

Bone Density

Loss of bone mass after transplant can occur due to low hormone levels, use of certain medications, as well as inactivity. A bone density scan should be done at least once after the transplant and followed up with additional screening and treatment if warranted.

Adrenal Function

When treatment with prednisone is being tapered or discontinued, your physician may need to check your adrenal hormone levels.

Guidelines for Chronic GVHD or Immunosuppression

  • Prevent and minimize bone loss by getting enough calcium and vitamin D, taking medications if prescribed, and doing weight-bearing exercise. Get bone density tests as needed to screen for osteopenia and osteoporosis (bone thinning).
  • Regular antibiotics must often be taken to reduce your risk of bacterial infections, such as encapsulated bacteria and Pneumocystis carinii pneumonia (PCP), which is also known as Pneumocystis jiroveci.
  • Get screened for muscle weakness that may be caused by corticosteroids and get physical therapy if necessary.
  • Some physicians also recommend taking medication to prevent fungal infections and recurrent symptoms from the herpes simplex virus and varicella zoster viruses.

Ongoing Testing

Ongoing testing may be required if past tests were abnormal or symptoms develop:

  • Liver function test
  • Ferritin testing (testing for iron in the blood)
  • Bone density tests
  • Urine protein screening
  • Neurological clinical evaluation
  • Thyroid function testing
  • Chest x-ray
  • Evaluation for depression, anxiety, PTSD, or other psychological issues

Getting a Second Opinion

A second opinion from a BMT specialist may provide valuable information about managing late effects from the transplant, or it may reassure you that the treatment you are getting is appropriate. Ideally, your doctor will welcome the input of another physician. However, some doctors may be reluctant to refer you outside the covered network, and some insurance companies may deny authorization for a second opinion due to cost concerns.

If your doctor refuses to authorize a second opinion to see a specialist, or your insurance doesn’t cover it, you can choose to pursue this further with the insurance company (please see below for more information) or to pay for the visit yourself.

I thought that my oncologist was offering me the best treatment for my ongoing skin GVHD. However, my GVHD continued to get worse, despite my continued use of prednisone and cyclosporine. It got to the point that I was experiencing severe itching and blistering all over and was getting sick every other week with some new bug. In desperation, I finally made an appointment with the Long-Term Follow-Up Department at a nationally recognized BMT Center. The doctor there made clear that the regimen I had been on impeded my immune system’s ability to build tolerance to my body. She put me on a completely different protocol, with a clear plan to taper my immunosuppression. A year later, I still have GVHD, but it is so much more manageable!

Appealing Your Case

If your request for a second opinion or type of treatment has been denied, you can sometimes overturn the denial by resubmitting your request with a strong claim (with valid medical reasons) for why the service should be authorized.

After my doctor denied my request to go out of network, I sent two appeal letters, and then my request was approved. Persistence pays off.

You can also contact your health plan’s customer relations department to discuss your request. If you do not agree with the results of the review, you can often appeal the decision to a panel of individuals who were not involved in the initial decision.

If you cannot resolve this within the framework of your health care plan, you may be able to have your case reviewed by your state’s external review program. Most states have review programs, but programs vary from state to state. More information about ways to appeal your case can be found in the legal departments of your health care institution or on the Kaiser Family Foundation website: www.kff.org/consumerguide/7350.cfm.

If you are having difficulty getting the care you need, recruit a friend or professional health advocate to help you.

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