Emma is 28 years old, has MDS, and she’s had two bone marrow transplants.
Despite the best efforts of you and those supporting you, your transplant may not work. It may be that the cells from your donor have not been accepted by your body (graft rejection or graft failure) or that your original condition has come back (relapse).
Your transplant team will be monitoring you closely for both these things, and often there will be other treatments available.
This can be a really tough time for you and your family, but your transplant team will talk you through the next steps.
Your team will be monitoring your chimerism levels. This measures how well your donor’s cell have engrafted – how many of your blood or bone marrow cells are being produced by your donor.
100% chimerism means that all of your bone marrow and blood cells come from your donor, while mixed chimerism means that some of your own cells are still there.
It’s quite common for people to need a donor lymphocyte infusion (DLI) after a transplant if they have mixed chimerism. This is when more cells from your original donor are given to ‘strengthen’ the donor cells and push the chimerism levels up to 100%.
But a bigger drop in your chimerism levels may be a sign of graft failure or graft rejection. This means the cells from your donor have not been accepted by your body or ‘engrafted.’ Your body won’t be able to produce new and healthy blood cells.
Graft failure is not very common. But it can happen at any time after your transplant, as it can take around two years for your new immune system to fully mature.
You’ll be having regular check-ups as part of your follow-up after transplant, including these tests to see whether your original condition has come back (relapse):
The risk of relapse is highest in the early stages after your transplant, and reduces after about two years. It’s much more unusual for the condition to come back after five years have passed, but it can sometimes happen.
It’s good to be aware of any changes to your body or new symptoms, and tell your transplant team as soon as possible if you’re worried.
Your options will depend on whether you’ve had graft failure or relapse, as well as other factors such as the type of transplant you’ve had, your original condition, age, general health, how well you coped physically with the first transplant, whether you had graft versus host disease (GvHD), and how long it’s been since your transplant.
Possible options include:
Donor Lymphocyte Infusion (DL I)
This might be an option if your disease has come back. It’s similar to having a DLI for mixed chimerism. There are two main differences.
One is that if you’ve had a relapse, you might have a DLI along with chemotherapy to help it work better.
The other is that the dose of cells might be higher, and this means that the risk of getting graft versus host disease (GvHD) is also higher. Talk to your team about whether DLI is a good option for you.
Your team will try to achieve a graft versus leukaemia (GvL) effect, where the donor cells attack the cancer cells. GvL often goes along with GvHD, and so you will be at a much greater risk of developing GvHD after a DLI or a second transplant.
If you do have chemotherapy, you might have it with a DLI or possibly before a second transplant. You will probably be familiar with the risks and side effects of chemotherapy, but talk these through with your team and loved ones again before making your decision.
This could be an option if you’ve had graft failure or rejection, or for some people who have relapsed. In some cases the same donor might be used as for your first transplant, but the transplant will be done with different chemotherapy drugs.
Clinical trials are a type of medical research study; a way of thoroughly testing new types of treatments. Speak to your transplant team about whether there are any clinical trials available for you to join. Find out more about being involved in a clinical trial from Cancer Research UK.
Lymphoma TrialsLink also has information on clinical trials for people with lymphoma.
Some people may not be able to have further treatment. This could be because the risk to you is too high, or you simply don’t want to.
This can be really difficult to face, even if it’s your own choice. It’s important that you know all your options, and that you’ve had time to think them through and talk to your transplant team, and your family and friends.
If you’re not having any further treatment, you may hear the term ‘palliative care’. Palliative care aims to relieve pain and other symptoms. It also provides people with emotional, physical, practical and spiritual support to help deal with their condition.
Palliative care can be provided at any stage; it’s not just for people in the final stages of life. You might have palliative care for many months or years.
During the palliative phase of your care, you may still receive transfusion, antibiotics and medication to help deal with any symptoms. You should be referred to a palliative care team who’ll be able to support you and your family during this time.
It’s natural to feel worried, angry or sad about having further treatment. All the feelings you had before your first transplant may come back, maybe even stronger that before.
Ask your medical team for practical information about treatment options which might help ease your worries.
It’s also important to get support for yourself and your family during this time if you need it.