Why Long-Term Follow-Up Matters

A hematopoietic cell transplant (bone marrow, blood stem cells or umbilical cord blood cells) holds the possibility of curing certain diseases or extending life for many people who go through this procedure. This possibility comes at a certain price.

A transplant and related treatments are intensive. They can impact many systems of your body—in ways that may clear up after a matter of weeks or months, and in ways that may last for many years or even the rest of your life.

The Long-Term Follow-Up (LTFU) Program at Seattle Cancer Care Alliance is designed to help you and your doctor to prevent, manage, and treat these potential late effects and discuss possible alternatives if your original malignancy recurs despite the transplant.

The issues
After you have a transplant, here are the kinds of issues you may face over the long term. We can help with all of these issues through our LTFU program.

• Regimen-related complications
• Transplant complications
• Graft-versus-host disease

Regimen-related complications. The preparative regimen given before and after the transplant, as well as the transplant process itself, affect more than just the cancer cells in your body. Any of these sites can be affected:

• Immune system (risk for infection)
• Skin
• Eyes
• Mouth
• Gastrointestinal tract (gut)
• Kidneys
• Lungs
• Endocrine system, including gonads (sex glands) and thyroid
• Metabolism (how your body uses energy)
• Bones and muscles
• Nervous system
• Emotional health

Transplant complications can affect the quality of your life, including school, work, and family-life issues. The main quality-of-life issues that patients grapple with include these:

Changes to activities because of suppressed immune system, including:

• Lasting fatigue
• Sexuality issues, such as impotence in men, pain with intercourse in women, and low libido in both sexes
• Trouble concentrating and remembering

You may also have higher risk of getting cancer in the future. This risk applies whether you had your transplant to treat cancer or some other disease. Risk increases with time. The most common cancers in people who have had a transplant are skin cancer, oral cancers, and breast cancer.

Some of these late complications and risks can be reduced or appropriately managed if you and your doctor know what to do. The LTFU has general guidelines to minimize the risk and severity of transplant complications.

Chronic graft-versus-host disease
Graft-versus-host disease (GVHD) occurs only in people who receive cells from a donor (allogeneic transplant), rather than a transplant of their own cells (autologous transplant). About 50 to 75 percent of allogeneic transplant recipients get chronic GVHD. Seattle Cancer Care Alliance has a team of world experts in the management of chronic GVHD.

GVHD occurs when the donor cells react against your organs. GVHD can affect many different parts of your body and cause a range of symptoms.

There are two types of GVHD:

• Acute GVHD, often happens in the first three months after your transplant
• Chronic GVHD, can develop any time between three months and three years after the transplant.

Both acute and chronic GVHD can be mild to serious. If you had acute GVHD, you are more likely to develop chronic GVHD, but some people without a history of acute GVHD may develop chronic GVHD.

Treatment of GVHD
Medications and other treatments that suppress the immune system are used to treat GVHD symptoms. Side effects of these treatments include increased risk of infection. Our LTFU medical staff will discuss with your physicians the most appropriate treatment and provide guidelines to help minimize complications from GVHD treatments.

Treatment for GVHD is necessary until the donor cells stop attacking the body (tolerance is reached). The average duration of treatment for chronic GVHD is two to three years from the initial diagnosis of chronic GVHD. Approximately 20 percent of patients with chronic GVHD may need treatment for more than seven years.

It’s important to recognize chronic GVHD because early treatment is more effective in controlling complications. Corticosteroids are the primary treatment. But because of steroids’ side effects, active work is underway to study new therapies. This happens through clinical trials, so the best approach for managing chronic GVHD often is to take part in trials.

You can read more about chronic GVHD in Chapter 7: Long-Term Recovery from the Patient & Caregiver Resource Manual for Adult Allogeneic Patients and in Long-Term Follow-Up After Hematopoietic Stem Cell Transplant: General Guidelines for Referring Physicians.

Cancer Recurrence
Although many patients are cured of their cancer after transplant, recurrence of cancer may still occur. Your oncologist will schedule regular check-ups to look for early signs of cancer. Our LTFU consultation service is available to discuss available options. Disease restaging is recommended during the LTFU comprehensive annual check-ups for at least the first five years after transplant.