Despite your best efforts and the support of your medical team, family and friends, your stem cell transplant might not work.
This could be because your donor’s cells haven’t been accepted by your body, that your original condition has come back or other complications such as Graft vs Host Disease (GvHD).
Your medical team will always monitor you closely so they can address any problems as soon as they start. Even if the transplant hasn’t worked, there are still other treatments available that can help.
This can be a really tough time for you and your family, but your medical team will talk you through your options at every step. During this time, you may want to consider some of the following and the impact they could have on you and your family:
After your transplant, your own immune cells might react to your donor’s cells and start to attack them because they see them as different. It’s also possible that your donor’s cells don’t develop and grow properly because there was a problem with engraftment (when they attach to your bone marrow and start growing).
When either of these happen, it’s known as ‘graft failure’ and it will stop your new immune system from developing.
Your team will monitor your chimerism levels. This measures how well your donor’s cells have engrafted, i.e. how many of your blood cells are being produced by your donor’s stem cells.
A large drop in your chimerism level could be a sign of graft failure and you may need to have a donor lymphocyte infusion (DLI).
Relapse after your stem cell transplant
If your original blood cancer or blood disorder returns, it’s known as relapse. The risk of relapse is highest in the early stages but reduces after about two years. It’s much more unusual for the condition to come back after five years have passed, but it sometimes can.
Your medical team will check for signs of relapse at your check-ups. This is done using a bone marrow test, where a sample is taken and analysed, or by scanning your body with a CT or PET scan.
It’s good to be aware of any changes to your body or new symptoms and to notify your medical team so they can be checked out.
The next stage in your treatment will depend on many factors including the type of transplant you had, your original condition, age, general health and how well you coped with your first transplant.
Your medical team are likely to discuss some of the following options with you:
Chemotherapy may be given to remove the cells that are causing the blood cancer or blood disorder to return. Chemotherapy is often given alongside other treatments, such as a DLI, or as conditioning therapy before a second transplant.
You will probably be familiar with the risks and side effects of chemotherapy, but they still need to be considered before making a decision on treatment.
Donor Lymphocyte Infusion (DLI)
This might be an option if your disease has returned. A DLI is given to try to achieve a graft versus leukaemia (GvL) effect, where the donor cells attack the cancer cells. GvL often happens with GvHD, and so there will be a greater risk of developing GvHD after a DLI.
It’s like having a DLI for a mixed chimerism but with two differences:
- If you’ve relapsed, you might have a DLI at the same time as chemotherapy. This will give the DLI a better chance of being successful.
- You might be given a larger number of cells in your DLI. This will give it a better chance of succeeding but also increases the risk of GvHD.
Your medical team will help you decide if a DLI is a good option for you at this stage.
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 your first transplant, but the transplant will be done with different chemotherapy drugs. Unfortunately, a second transplant isn’t a suitable option for everyone.
Clinical trials are a type of medical research study – a way of thoroughly testing new types of treatments. Each trial is based in either one or a few hospitals throughout the country, and will only be able to include certain patients based on their condition and previous treatments. Your medical team will be able to talk about suitable trials with you, when the time comes.
Palliative and supportive care
Some people may not be able to have further curative treatment – the risk is either too high, or they might decide to not have any more treatment. However, there is still plenty that can be done to support you at this stage.
Whether you make this choice or it’s made for you, it can be really difficult to face. It’s important that you know all your options, and that you’ve had time to think them through and spoken to your medical team, family and friends.
If you’re not having any further treatment, you may hear the term ‘palliative care’ being used. Palliative care aims to relieve pain and other symptoms. It’s also a key part of end of life care that can provide people with emotional, physical, practical and spiritual support to help them deal with their situation.
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 transfusions, antibiotics and medication to help deal with any symptoms.
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, perhaps even stronger than before.
It’s important to get support for yourself and your family during this time if you need it. But sometimes you might decide that you want to talk about a problem with somebody who isn’t a close friend or family member.
There are options available to you, so you can always try out a few until you find somebody you are comfortable with. This includes members of your medical team, but you may also find comfort in talking to religious figures, people at charities like Maggie’s or Macmillan, the Samaritans or the Anthony Nolan Patient Services team.
Coping with loss
Unfortunately, stem cell transplants are not always successful. Over time you may have to come to terms with the death of someone you were close to during your hospital stay or recovery. This is never easy to cope with and it could be a particularly emotional time for you, especially if you are also experiencing complications with your own recovery.
There is no right or wrong way to deal with your feelings, but it’s not a good idea to ignore them in the hope that they will go away. Try to find a way to express your emotions because it will help you come to terms with how you are feeling. Sometimes writing things down can be a useful release. If you would like to talk to someone, your transplant team can organise a counsellor for you.
Information published: 29/11/21
Next review due: 29/11/24