What if my transplant doesn't work?

Why would a stem cell transplant not work?

A stem cell transplant might not work because:

• your body hasn’t accepted your donor’s cells
• your original blood cancer or blood disorder has come back
• you experience other complications such as graft versus host disease (GvHD).

Your medical team will monitor you closely to address any problems as soon they notice them. If your stem cell transplant hasn’t worked, your medical team can usually offer other treatments to help. This will certainly feel tough, but your team will talk you through your options at every step.

We’ll explore the details of some reasons why a stem cell transplant might not work at all, or not work as well as expected.

Graft failure

If your transplant does not work at all from the offset, this is known as ‘graft failure’. This means when either of the following things happen, your new immune system will stop developing:

• Right after your transplant, your own immune cells attack your donor’s cells because they see them as different.
• Your donor’s cells don’t develop and grow properly because there was a problem with ‘engraftment’. This is when the new cells attach to your bone marrow and start to produce white blood cells to form your new immune system.

After your transplant, your team will monitor your chimerism levels, which means looking at the ratio of mixed stem cells from yourself and your donor. This measures how well your donor’s cells have engrafted, or in other words, how many blood cells your donor’s stem cells are producing.

If they notice a large drop in your chimerism level, it could be a sign of graft failure. You may need to have a donor lymphocyte infusion (DLI) or another type of treatment.

Relapse after your stem cell transplant

Your transplant might appear to work for a period of time, before the same blood cancer or blood disorder then returns. This is known as relapse.

You’re at the highest risk of relapse in the early stages after transplant, but this reduces after about two years. It’s much more unusual to relapse from five years onwards, but it’s not impossible.

Your medical team will look for signs of relapse at your check-ups. They’ll do this by testing your bone marrow, where they’ll either:

• take and analyse a sample
• scan your body with a CT-PET scan.

It’s good to note any new symptoms or changes to your body. You should tell your medical team as soon as possible so they can check what’s going on.

GvHD and other infections

Like in relapse, your stem cell transplant might initially appear successful, only to be affected by a new infection or GvHD.

While your immune system is developing, you will be very vulnerable to getting infections and diseases that can damage or weaken it. If this happens, your medical team might find that your new immune system is not strong enough to protect you from infections and diseases in the future.

If your transplant wasn’t successful in this way, your medical team might need to offer another treatment.

What are my treatment options if my transplant hasn't work?

If your transplant hasn’t worked, your medical team will discuss all available options with you – this section lists the most common treatment options.

Their recommendations will take lots of things into account, including:

• the type of transplant you had
• your original condition
• your age
• your general health
• how well your body coped with your first transplant.

You will also have a say in your treatment. Your team can answer any questions so you’re clear about any potential risks and benefits.

What is palliative care?

Some people may not be able to have further treatment for their condition. Either the risk is too high, or they might choose to stop having treatment. Even when this is the case, lots of things will be available to support you in this final stage. This is what we call ‘palliative care’.

Palliative care aims to relieve pain and other symptoms. It’s a key part of end-of-life care that can provide you with emotional, physical, practical and spiritual support to help come to terms with facing death.

Whether you make the choice to stop treatment, or someone makes the choice for you, this will feel extremely difficult. It’s important that you:

• know all your options
• have had time to think your options through
• have spoken to your medical team, family and friends.

You can get palliative care at any point, it’s not just for people in the final stages of life. Some people have palliative care to help with pain for many months or years. You can receive this care in different locations, depending on your situation. Some people get it in hospital, others in a hospice or even in your own home.

During the palliative phase of your care, you may still receive transfusions, antibiotics and medication to help deal with any symptoms. It aims to make you feel as comfortable as possible.

Getting support for how you feel

It’s natural to feel worried, angry or deeply sad when having further treatment or facing the choice to stop your treatment. All of the feelings you experienced at the time of your first transplant may come back, perhaps even stronger than before.

During this time, it’s important to get support for yourself and the people close to you.

Sometimes you might want to talk about a problem with somebody who isn’t a close friend or family member. You can always try out a few options until you find somebody you feel comfortable with. This includes:

• members of your medical team
• religious figures
• people at charities like Maggie’s, Macmillan or the Samaritans
• the Anthony Nolan Patient Services team.