Donating your stem cells to a relative

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Why does my relative need a stem cell transplant?

You’re probably reading this webpage because a family member of yours needs a stem cell transplant. This is most likely because they have either a blood cancer or a blood disorder. Stem cell transplant can be used to treat other immune system or metabolic disorders too.

As their relative, you have a good chance of being able to donate your stem cells to them. You may have already been asked by the medical team if you want to donate.

This can be a very difficult and emotional time for everyone involved. Deciding whether to be your relative’s donor can put a lot of pressure on your shoulders, alongside the continuing worry of whether they’re going to get better.

It’s important you have all the facts to understand both why your relative needs a transplant and how the donation process works. The following information should answer any questions you have and help with your decision on whether or not to be a donor.

Why are stem cells important?

Stem cells are immature cells in your body. All other cells, tissue, organs and bones develop from stem cells.

Blood stem cells are cells which are found in the bone marrow. Your bone marrow is spongy tissue found in the middle of some bones, like your hip, thigh and breastbone.
Blood stem cells can become three main types of blood cell:

• Red blood cells, which carry oxygen around the body
• White blood cells, which help to fight infections
• Platelets, which help to form blood clots and stop bleeding.
  

Blood stem cells are like templates with instructions for creating new blood cells. They create the millions of blood cells needed in your body every day by copying (or ‘dividing’) themselves over and over again. Blood stem cells are also responsible for growing your immune system.

If one copies itself incorrectly, this can lead to millions of ‘wrong’ templates and instructions. If this happens, your new blood cells may not work properly, and you could develop a blood cancer or a blood disorder. Or your immune system may not develop or function properly, and you could develop an autoimmune condition like multiple sclerosis.

How do transplants work?

There are two main types of stem cell transplant:

• Allogeneic (or allograft) transplants use stem cells collected from someone else – either a relative, like you, or an unrelated donor from the stem cell register.

• Autologous (or autograft) transplants use the patient’s own stem cells. They are collected and then put back in the body after chemotherapy.

If your relative needs an allogeneic transplant, their medical team will search for a donor. This may have already happened, and they may have identified you as a potential donor.

When a matching donor is found, your relative will start treatment to prepare their body for the transplant.

Shortly before you donate the cells, they will have chemotherapy and possibly radiotherapy. You may hear this referred to as ‘conditioning therapy’. This removes the abnormal cells which are causing their condition. The donor’s stem cells will also be collected during this time.

The day after conditioning therapy finishes, the donated cells are infused into your relative’s bloodstream. This is a similar process to having a blood transfusion. Younger patients may need a rest day, so they will receive your donated cells one or two days after conditioning therapy finishes.

The transplanted stem cells then travel to the bone marrow and start producing new blood cells. Over time, this forms the basis of a brand-new immune system that can recognise and remove any remaining abnormal cells. It will also protect against harmful bacteria and viruses that cause infections.

For more information on stem cell transplants, visit Understanding Stem Cell Transplants.

How do you test for a match?

You and your relative will be tested for a match based upon your human leukocyte antigen (HLA) tissue type. Your HLA is what makes you ‘you’ – it’s a key part of your individual genetic make-up.

HLA types are similar to blood groups but much more diverse. To be a suitable donor, you need to have a tissue type that matches your relative’s – but matching your blood groups isn’t necessary.

Your HLA is made up of five genes*. Each one of these genes has two versions (called alleles) that you inherit from your mother and father, making 10 in total. If 9 match, it’s a 9/10 match. If all 10 match, you’re a 10/10 match. When it comes to finding a match, the higher the better, but the transplant can still be successful if the match isn’t 10/10.

HLA types can be worked out from a blood or swab sample. Someone in the medical team will take some blood from your arm using a needle or swab the inside of your mouth. The blood or swab sample will then be sent to the lab for testing, which can take up to eight weeks.

The better the match, the better the chance of your stem cells being accepted by your relative’s body. This is known as engraftment. The better the engraftment, the less likely that problems will develop after transplant.

*You may hear the term 12/12 being used as well. This is because recent research has shown the importance of a sixth HLA gene when matching donors to patients. However, the principle is the same – when it comes to finding a match, the higher the better.

As a related stem cell donor, there are two types of transplant you could potentially be selected for:

Sibling

If your brother or sister needs a transplant, in most cases you will be tested first because you have the best chance of being a full match. This is because you have the same parents, and our tissue type is a combination of our parents’ tissue types. There’s a 25% chance of fully matching your sibling. If you have other brothers and sisters, they will be tested at this point too.

Speaking to other people, I recognise how lucky I am. If it wasn't for George, I would have desperately needed a stranger's help. It could have been a completely different story.

Will received stem cells from his brother to treat ALL (acute lymphoblastic leukaemia)

Haploidentical

When a matching sibling or unrelated donor can’t be found, a haploidentical transplant may be an option.

Haploidentical transplants use stem cells from a family member whose tissue type is a half-match. Parents are always a half-match for their children, and vice versa. Siblings have a 50% chance of being a half-match for each other. This means there’s a greater choice of potential donors – most people have at least one haploidentical match in their family.

In the past, these half-matched transplants wouldn’t have been possible because of low success rates and post-transplant complications like graft vs host disease (GvHD). However, improvements in the transplant process and new treatments have helped to make haploidentical transplants a possible alternative.

Unfortunately, haploidentical transplants are not a suitable treatment for all blood cancers and disorders. Your relative’s medical team will be able to give you more information about the best possible option for them.

As soon as I was told I would be my son’s only donor, it was a no-brainer for me. I wanted to do everything I could to help him. It was so easy and straightforward being the donor – he had all the toughest work ahead of him. I would do it again in a heartbeat.

Dan, who donated stem cells to his son Reuben

Other options

Usually your wider family and friends will not be tested as it’s very unlikely they will be a match. If they want to help other people in need of a stem cell transplant, they may be interested in joining the Anthony Nolan register.

If a matching related donor isn’t available, your relative’s medical team will contact Anthony Nolan. We will search all the possible donors in the UK, and registers across the world, to find the best match.

If necessary, we will also check for cord stem cell matches in our cord bank. Find out more here about cord blood transplants.

What happens next?

You’ll have a chat with your relative’s medical team before you decide to go ahead with testing. They’ll discuss with you:

• how they will test to see if you’re a match
• what donating will involve
• the potential impact donating could have on you.

If the blood or swab test shows you’re a suitable match and you’re happy to proceed, the medical team will arrange a ‘donor assessment’ and medical screen for you. This is to make sure you’re fit and healthy enough to donate. Your medical confidentiality will always be carefully protected.

Please ask as many questions as you want during this appointment. This meeting is for you and it’s really important you fully understand what’s involved so you can make an informed decision about donating. It’s also vital you feel as confident and comfortable about your decision as possible.

What would stop me being able to donate?

It might not be medically safe for you to donate your stem cells, which can be upsetting when you want to help. However, the doctors will make their decision based on what’s best for you and your relative.
You may not be able to donate if you:

• weigh less than 50kg or have a body mass index (BMI) of over 40
• have severe lung disease such as emphysema or lung fibrosis or, in some cases, asthma
• have uncontrolled high blood pressure or other heart complications
• have an autoimmune condition
• have epilepsy or other neurological conditions
• already have, or are at risk of contracting hepatitis C, HIV, malaria or other infections
• have anaemia, sickle cell disease or thalassaemia
• are pregnant or have recently given birth.

There are also some conditions and medical complications that would prevent you from ever being able to donate. These include a medical history of cancer, stroke, heart attack and major heart surgery. Your relative’s medical team will discuss all these with you and they’ll be happy to answer any questions you may have.

I wanted to be a match so badly, as I wanted to fix things for my brother. I feel for those siblings who aren’t a match, because for me it was something I wanted so much.

Liz, who donated stem cells to her brother Matt

How do I donate my cells?

If you’re fit and able to donate your stem cells, the next step will be to set dates for your donation and your relative’s transplant.

As time goes on, it’s possible that the dates will need to change. For example, your relative’s condition may change close to the transplant and the doctors could decide to delay it. This will all be handled by the medical team, but you may need to keep your plans flexible.

There are two ways you can donate your stem cells:

• 90% of people donate via their bloodstream in a process called peripheral blood stem cell (PBSC) collection. You’ll receive a course of injections for a few days before, and then go into hospital for the day where stem cells are collected from your bloodstream over 4-5 hours and filtered out using a special machine. Read more about donating via PBSC.
• 10% of people donate through their bone marrow. The cells are collected from your pelvic (hip) bone while you’re under a general anaesthetic, so you won’t feel a thing. You’ll stay in hospital for about two nights. Read more about donating via bone marrow.

Your relative’s medical team will decide which type of donation will be best. This will depend on your relative’s condition. They will talk you through each type of donation in more detail at your donor assessment appointment.

Read more about the donation process.

You may also have heard of stem cells being donated from umbilical cord blood. If someone having a baby agrees to donate their cord blood, a medical team can collect the stem cells from the newborn baby’s umbilical cord. We've further information here on cord blood donation.

Will I need to donate again?

You may need to donate more blood cells to your relative if they need something called a donor lymphocyte infusion (DLI). This is when more white blood cells are given to your relative to cause an immune reaction that helps ‘boost’ the original stem cell transplant.

Although DLIs can treat patients who have relapsed, it doesn’t mean the transplant has failed if your family member needs a DLI. DLIs are sometimes planned before transplant to try to prevent relapse happening. Your relative’s medical team will be able to talk to you about why they need their DLI.

When you gave your first donation, the medical team may have been able to freeze and store some of your blood cells that weren’t needed. If this happened, you may not need to donate again for the DLI. If you do donate again, it will be a simpler procedure than before, and you shouldn’t need to have more injections. The process is very similar to giving blood.

You don’t have to donate again if you don’t want to – the choice is yours. The medical team will address any questions or concerns you might have and give you another medical check before you donate for a DLI.

You can read more about DLIs and when they might be needed on our Donor Lymphocyte Infusion webpage.

What if I can’t donate, or I feel unable to?

It can be hard to find out you’re unable to donate for your relative, especially if finding a matching donor is proving tricky.

It can also be hard to choose not to donate if it’s not right for you. But it’s brave, too. It’s far better to be honest with yourself and your relatives straight away, than to begin the process only to pull out at a later stage. And nobody wants you to do something you don’t feel able to do.

In either case, it’s important to protect your emotional wellbeing, and to speak to someone you feel comfortable with if you’re struggling with your feelings around the situation or your decision.

You can find more information on charities and organisations that can support you and your mental health below.

What if my relative’s transplant doesn’t work?

Be kind to yourself

It can be very difficult to find out your relative’s transplant has failed after you have donated. Please try to not feel responsible or guilty. The transplant process is complicated, and so many different factors can affect the journey and outcome. So it’s important to take a step back and look after yourself.

I wasn’t prepared for my sister’s transplant not working the first time. When you donate to a stranger, you can feel good but walk away. When it’s your family member, it’s much more personal and harder emotionally. There’s more worry. My advice is to prepare yourself mentally and physically.

Mark, who donated stem cells to his sister twice

Everybody reacts to stressful events in their own way, and we all find different ways to cope. Some people prefer to talk things through with friends and family, while others benefit from talking to a therapist.

It’s understandable that you’ll be focused on your relative’s health, but you need to look after yourself too. We support those we love much better when we’re also supporting ourselves.

However you choose to manage the situation, it’s crucial to take the time to consider how your mental health is being affected and seek help, if you need it. Charities and organisations that can support you and your mental health are listed below.

Be there for your relative

It will take time before your relative starts to feel anything like ‘normal’ again after their transplant. Although they may look much better than they did before, they could still have a long period of recovery ahead of them. They may experience different side effects which affect their physical and mental wellbeing, such as fatigue.

Try to offer them support when you can. You may be able to help with general day-to-day chores or can simply be someone to talk to about what they’re going through. We have more information in our Recovery section.

Be a champion for Anthony Nolan

When the time is right, you may decide to join our register of potential stem cell donors. As you can imagine, it could make a vital difference to families who are unable to donate stem cells to their relative. If you’ve been tissue-typed for your sibling and would like to join the Anthony Nolan register, please contact register.support@anthonynolan.org

If you’re unable to join the register but you’d still like to help, you can support Anthony Nolan in many other ways. You can volunteer on our behalf, take part in a fundraising event (from a bake sale to a marathon), support our campaigns, or simply make a much-needed financial donation to ensure our lifesaving work can continue in the future.

Find out more at anthonynolan.org/help-save-a-life

Other useful contacts

British Association for Counselling and Psychotherapy
Information about counselling and therapists in your area.

Macmillan Cancer Support
Practical, financial and emotional support for people with cancer, their family and friends.

Maggie’s
A network of drop-in centres for cancer information and support. Includes an online support group.

Mind
Mental health charity which offers information, advice and support to anyone going through stressful situations or experiencing a mental health problem.

NHS
Information about treatments, conditions and lifestyle. Support for carers and a directory of health services in England.

NHS Talking Therapies

Find an NHS psychological therapies service, such as cognitive behavioural therapy (CBT), counselling, other therapies, and guided self-help.

Samaritans
The Samaritans are available 24 hours a day to listen and provide help for any problem you would like to talk about.

Teenage Cancer Trust
Support to improve the lives of teenagers and young adults with cancer.

Young Lives vs Cancer
Offers a range of services for children affected by cancer and their families, including a helpline for emotional support and practical advice.