You or someone you know has probably undergone a major life-saving surgery, such as an organ transplant. Or a stem cell transplant. After these things, there are rare, unexpected complications. One such complication is PTLD, or Post-Transplant Lymphoproliferative Disorders. Since this can be a bit serious, let's talk about it in a simple way that you can understand.
What exactly is PTLD?
Simply put, PTLD is a life-threatening complication that can occur after an organ transplant or an allogeneic stem cell transplant. What happens here is that a type of white blood cell in our body, called lymphocytes, divides rapidly and increases uncontrollably.
This condition called PTLD is actually a type of lymphoma . Lymphoma is a type of cancer that develops in our lymphatic system. This condition occurs when white blood cells become cancerous and grow rapidly without dying.
PTLD is often caused by the Epstein-Barr Virus (EBV) . This is a virus that we all have in our bodies. There are different types of PTLD, and the way it affects someone can vary. The good news is that doctors can treat it. However, sometimes the condition can come back.
What are the main types of PTLD?
Doctors divide PTLD into four main types based on how the lymphoma cells look under a microscope:
- Early Lesion: These people experience symptoms similar to those seen with the Epstein-Barr virus (EBV).
- Polymorphic PTLD: Here, lymphoma cells are mixed with other types of white blood cells, such as normal lymphocytes and plasma cells.
- Monomorphic PTLD: This is the most common type of PTLD . The lymphoma cells here are similar to those found in other types of lymphoma, such as ``Non-Hodgkin Lymphomas''. For example, ``Diffuse Large B-cell Lymphoma'' or ``Burkitt Lymphoma''.
- Classic Hodgkin Lymphoma - PTLD type: This is the least common type of PTLD .
How common is this condition called PTLD?
As mentioned earlier, PTLD is a very rare condition . That means it doesn't happen to everyone. Roughly speaking, about 2 out of 100 people who have had a stem cell transplant (`(2%)`) will develop PTLD. People who have had an organ transplant are slightly more likely to develop PTLD. But that also varies depending on the organ transplanted.
Think about it this way, while about three out of 100 people who have had a kidney transplant (`(3%)`) develop this condition, experts say that about ten out of 100 people who have had a lung transplant (`(10%)`) may develop this condition. So, there's nothing to worry about, this isn't something that happens to most people.
What are the possible symptoms of PTLD?
Some people may not have any symptoms at first. PTLD symptoms can appear at any time, from a few months to several years after the transplant. If symptoms do appear, they may include:
- Feeling very tired (`Fatigue`) : Just a feeling of lifelessness.
- Fever for no reason .
- Food is tasteless .
- Unexpected weight loss .
- Excessive sweating at night (`Night sweats`) .
- Swollen lymph nodes : They feel like lumps in the neck and armpits.
Why does this PTLD occur? What are the causes?
This is a bit of a stretch to understand. PTLD occurs because a very common virus takes advantage of a weakness in our immune system .
Imagine that you are preparing for a stem cell transplant. Before that, you will be given chemotherapy to kill the cancer cells in your bone marrow. This is called conditioning. This weakens your immune system’s ability to protect you from disease. Specifically, conditioning reduces the activity of the T cells (T-cells) that have been infected with EBV and become inactive again.
Then, after the stem cells or organ are transplanted, your body is given immunosuppressant medication to prevent it from rejecting the new thing. While these medications protect the new organ or cells, they also weaken our body's defenses, making it more vulnerable to foreign invaders like viruses.
In PTLD, the main viral agent is the Epstein-Barr virus (EBV) . EBV has been linked to PTLD that develops within a year or two of a stem cell or organ transplant. However, the exact cause of PTLD that develops years after the transplant is still unknown. Experts are also investigating whether viruses such as cytomegalovirus (CMV) or adenovirus (Adenovirus) may play a role.
According to experts, about 90% of our population has been infected with EBV at some point in their childhood or adolescence. You may have the virus without any symptoms, and you may not even know it. The EBV virus infects our B cells and remains "sleeping" inside the body, that is, in a ``Latent'' state, without causing any problems. (You may also have gotten the virus from a donor.)
Because you're taking those immunosuppressive drugs, your immune system can't keep that dormant EBV under control. Then, the EBV-infected B cells start dividing and multiplying rapidly. That's what leads to PTLD.
Who is at higher risk of developing PTLD?
Your risk of developing PTLD may be increased for the following reasons:
- Having Epstein-Barr virus (EBV) in your body or in the body of the person who gave you the organ/cells (`(Donor)`).
- Having received treatment (`Pre-transplant conditioning') that reduces the normal function of your T cells before the transplant.
- Taking immunosuppressant medication to prevent your body from rejecting the new organ or cells.
- Having variations in certain genes (`(Genes)`) that increase the risk of developing PTLD.
How do doctors diagnose this condition called PTLD?
Doctors will first perform a physical examination and take a careful look at your medical history. In addition, they will usually do the following tests:
- Complete Blood Count (`Complete Blood Count - CBC`) .
- Comprehensive Metabolic Panel .
- Lactate dehydrogenase (LDH) level.
- Urinalysis , including uric acid levels.
- A test to detect antibodies produced in the body against the EBV virus .
- CT scan (`Computed Tomography - CT scan`) .
- MRI scan (Magnetic Resonance Imaging - MRI) .
- PET scan (`Positron Emission Tomography - PET scan`) .
- Bone marrow biopsy .
These tests are what allow doctors to determine exactly whether PTLD is present or not, and if so, what it looks like.
What are the treatments for PTLD?
Doctors usually start by reducing the amount of immunosuppressant medication they take . Sometimes this can make a big difference. In addition, there are other treatments such as:
- Chemotherapy : Medicine that kills cancer cells.
- Radiation therapy : Destroying cancer cells using high-energy rays.
- Immunotherapy with monoclonal antibodies : This involves using specific proteins (monoclonal antibodies) to attack cancer cells.
- Surgery : This is rarely done. Surgery is only considered if the PTLD is localized and can be safely removed. For example, if the tonsils are affected by PTLD, the tonsils may be removed.
Is there anything we can do to prevent PTLD from developing?
There is really nothing we can do to directly prevent PTLD. However, doctors and researchers are looking into some medications that can be used before and/or after transplant to reduce the risk of PTLD. So, there is hope that there will be better solutions for this in the future.
What happens if you develop PTLD? Can it be cured?
How you will respond to PTLD can vary from person to person. It depends on many things.
For example, sometimes PTLD improves even if doctors simply reduce the immunosuppressants.
Recent studies have shown that between 60% and 70% of people who develop lymphoma after an organ transplant and are treated with immunotherapy and chemotherapy have experienced a reduction or disappearance of symptoms (remission) .
Can PTLD be cured? Yes, PTLD can be cured with `Immunotherapy` alone or in combination with `Chemotherapy`. Studies have shown that between 50% and 60% of people who receive this treatment recover completely . So, this is something to be hopeful about.
What are the most important questions I should ask my doctor?
If you have PTLD, it's a good idea to ask your doctor questions like these:
- Why did this happen to me?
- How is PTLD treated?
- If I reduce my immunosuppressant medication, what is the chance that my body will reject the new organ/cells?
- If my treatment is successful, what are the chances of this condition coming back?
In addition to these questions, don't be afraid to ask the doctor anything you have on your mind.
When should I see the doctor?
If you have PTLD, your doctor will monitor your overall health closely . They will look for signs that your condition is getting worse. If you are being treated for PTLD, your doctor will explain what changes you are experiencing or if your symptoms are getting worse. It is important to tell your doctor right away if this happens.
Finally, things to remember
Organ transplants and stem cell transplants can sometimes save lives or extend life . However, because these are major medical procedures, they can come with risks. PTLD is one such rare, but potentially serious, complication.
If you are a candidate for an organ or stem cell transplant, your healthcare team will talk to you about your risk of PTLD , as well as many other risk factors. Doctors and researchers are looking for ways to reduce the risk of PTLD. The most important thing is to be aware of this and to ask your healthcare team any questions you may have.
` PTLD, Post-Transplant Lymphoproliferative Disorders, Organ Transplant, Lymphoma, Epstein-Barr Virus, Immunology, Cancer
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