Post-transplant lymphoproliferative disorder (PTLD)

PTLD is group of conditions that may happen after a transplant. It involves the immune system and causes white blood cells called lymphocytes to multiply out of control.  The seriousness varies from an overgrowth of the lymphocytes that is not harmful, to full-blown lymph node cancer (called lymphoma). PTLD is a complication of anti-rejection medicine; many cases are associated with infection with the Epstein-Barr virus (a member of the herpes virus family). You may already have this virus, or it may come from the transplanted kidney. This is one of the most serious complications of having a transplant.

There are four (4) main types of PTLD:

• Early lesions, which may often go away if your doctor can lower the dose of immunosuppressive drugs.
• Polymorphic PTLD, has a mix of different types of cells.
• Monomorphic PTLD, has 1 type of cell and is the most common type of PTLD.
• Other types, which are rare, such as Hodgkin’s disease.

Very few people get PTLD after a transplant; it is more common in children and in the elderly. Your chances of getting PTLD are greatest during the first few months after your kidney transplant, when you are on the highest dose of immunosuppressive drugs. It can also happen later, even several years after your transplant.

If you do get PTLD, the outlook for your health depends on what type of PTLD you have and how well it responds to treatment. Talk to your doctor about your chances of getting PTLD and the outlook for your health.

What are the symptoms of PTLD?

Many cases of PTLD involve the transplant kidney itself.  Sometimes a patient will feel a lump in the neck, armpit, or groin. This lump is a swollen lymph node (gland) where abnormal white blood cells (called lymphocytes) gather. However, lymph nodes can become enlarged in places deeper inside the body, so you cannot feel it from the outside, but it can be seen on tests (imaging studies such as a CT scan or an MRI). General symptoms may include fever and night sweats, unplanned weight loss, decreased appetite, or just not feeling well.

What are the tests for PTLD?

You will need a biopsy to find out if you have PTLD. Your doctor may also do other tests such a blood test for circulating EBV virus, as well as scans and possibly a bone marrow biopsy.

What is the treatment for PTLD?

If you have PTLD, your transplant doctors should work closely with your cancer doctors for the best treatment.

A first step is to slowly lower your immunosuppressive drugs, if possible. Your transplant doctor will do this carefully and watch your transplant closely to try to prevent rejection. Depending on the type of PTLD, you may need other treatments. A common treatment is antibody therapy with the medication rituximab. Many patients will also need chemotherapy. Some patients may need radiation therapy or surgery. Some of these treatments can reduce your white blood cell counts, which can increase your chances for infections. There is also the chance that your body may reject your transplanted kidney when the immune suppressive drugs are reduced.

How can I increase my chances of successful treatment?

Finding PTLD as early as possible can help give you the best chance of successful treatment. Pay attention to how you feel and talk to your transplant team if you are worried about your health.