Caring for someone having CAR T-cell therapy

Looking after a loved one having CAR T-cell therapy can feel like a big responsibility. As a carer, you might wear many hats: providing emotional support, managing appointments, helping with personal care and hygiene, keeping a close eye on symptoms and side effects, and more.

You may feel a rollercoaster of emotions during this time. You may feel overwhelmed, stressed, or very tired. You may also feel anger, guilt, or upset from how much your life or relationship has changed. Sometimes, you may feel very alone.

There will be times when you won’t know what to expect, what will happen next, or how to plan for ups and downs. There will be good days and hard days. These feelings can worsen if you are tired, worried about money and finances, not getting enough rest, or struggling to care for yourself.

You may both feel many difficult emotions and express them differently, like being quieter, more upset or snappier than usual. Know that this is a difficult time: for you and the person you’re caring for.

When you take on the role of a carer, you may spend more time together, which can feel new and challenging. The dynamic of your relationship may shift in ways that feel different from “normal”, and adapting to these changing roles can sometimes feel tough.

Good communication can help you and your loved one feel supported, understood, and connected, even when things are hard. Your loved one might feel vulnerable, anxious, frustrated, or even angry. You might be experiencing similar emotions yourself.

Talking about these feelings can be challenging, but open communication helps avoid misunderstandings and allows you both to express yourselves.

When a loved one is having CAR T-cell therapy, emotions are high, and difficult conversations may happen more frequently.

Making time and space for conversations can help. If it feels right, set some simple rules for talking openly. For example, if a conversation starts to feel heavy or overwhelming, take a break and revisit the conversation later.

It can also help to talk about what is most important to you and your loved one right now and in the future. Although it can be difficult, you may want to talk about what happens if treatment doesn’t work, and how your loved one would like to be cared for if they can’t make decisions in the future. This is often called advance care planning. Your loved one’s hospital team will be able to help you discuss this. You can also find more information about it on the Macmillan Cancer Support website.

These conversations might feel hard, but they will help you understand your loved one’s wishes and make decisions together.

Sometimes, you may not know how to respond to something right away. And that’s perfectly fine. Give yourself time to think of ways to respond and come back to it when you feel ready.

You may also feel you need more support for yourself or your loved one. We provide some ideas on where you can get some support below.

Seeking help is often the first step towards being well and staying well. But sometimes, it is difficult to know where you can get help - especially if you also have children, pets, or elderly family members to care for.

If you can, build a support system of people and resources you can turn to during the CAR T-cell therapy process. Let them know what you need and when. If you don’t have a close network to rely on, consider reaching out to support groups, local charities, or your loved one’s healthcare team.

We have included some ideas for who you can include in your support system and where you can find them:

Make a list of friends and family members you can contact anytime. To make delegation easier, you may even want to create a roster for your day-to-day chores like laundry, picking up the kids from school, cooking, cleaning, and more.

Our page on practical and financial support for people receiving CAR T-cell therapy has some information on where you can get help with children and pets.

Your loved one’s medical team can answer any questions you have about blood cancer or CAR T-cell therapy. It can be helpful to write down any questions you have before meeting with your loved one’s medical team. They will be able to advise you about the impact of the treatment on your life and any preparation that may be required.

We’re dedicated to supporting everyone affected by blood cancer. You can contact our Support Team on 0808 2080 888 or email [email protected] with any questions about caring for your loved one, or just to talk. You can also connect with other people affected by blood cancer on our online forum.

• Carers UK runs a Carers Connect forum where you can talk to other carers. They also run online chats and meetings.
• Carers Trust offers a wide range of resources and information for unpaid carers.
• Carers First also provides information, advice and support for carers, including information on your rights as a carer.

Some hospital's have therapy sessions or support groups for carers. Ask your loved one's clinical nurse specialist what support is available.

Many carers find it helpful to talked to a trained therapist or counsellor. Here are some ways you could find a therapist:

• ask your GP to refer you
• self-refer online on the NHS website in England or through Breathing Space in Scotland
• ask your employer about well-being support (many employer's offer free sessions with a counsellor for employees).

Often, people with blood cancer and their families are excited to return home from the hospital, but this comes with new challenges.

It might take some time before things feel “normal” again and managing expectations is important. There will be ups and downs. There will be good days and hard days. If things feel tough now, remember that they will get easier over time.

We know that carers are sometimes surprised by the amount of medicine to take care of at home, and it can look like a lot. But try not to worry. Your loved one’s hospital team will give you all the instructions you need, and you can always ask questions.

Coming home might feel a little difficult at first, but many people find things get easier as they start to settle into a routine. Support is always available to you if you need it. We also have a checklist of some of the most important things to focus on when returning home from the hospital.

In some cases, depending on how your loved one is feeling, their discharge date may be moved. Your medical team will let you know if they think this becomes relevant.

Your loved one will only be discharged if they are well enough to leave the hospital. Usually, this is two to four weeks after their infusion.

Sometimes symptoms can appear after you return home. Knowing the side effects of CAR T-cell therapy is important so you can recognise side effects early and inform your loved one's care team as soon as possible.

Familiarise yourself with symptoms such as:

• cytokine release syndrome
• symptoms of infection
• shortness of breath
• neurological symptoms like confusion, delirium, dizziness, or hallucinations

Your loved one’s medical team will tell you what side effects to look for, how often to look out for them and when to seek urgent help.

Keep a list of side effects and emergency numbers (including out-of-office contact details) handy.

If anything feels “off”, don’t wait for the symptoms to worsen. Contact your loved one’s care team immediately.

CAR T-cell therapy can weaken your loved one’s immune system. This means it is easier for them to get an infection, and infections can be more serious. They will be given medication to help prevent infections, but sometimes, they can still catch something.

Take extra care to avoid bringing infections home. This may mean taking extra precautions like wearing a mask and washing your hands often.

It is advised that people recovering from CAR T-cell therapy avoid contact with people who feel unwell. If someone is ill, ask them to rearrange a visit to after their infection has passed or when your loved one’s immune system is stronger.

To keep your loved one safe, you may sometimes need to make some temporary adjustments at home. For example, if you do not feel well, try to have separate sleeping arrangements to avoid passing on any germs. If you are healthy, your usual sleeping arrangements are fine.

If you have any questions about managing infection risk, please contact your loved one’s medical team.

Your loved one’s treatment may affect their appetite. But food is important for their recovery. A balanced diet can help your loved one stay strong, cope with symptoms of tiredness, and support their immune system.

If your loved one has no appetite, encourage them to eat little and often. This can help maintain energy levels and help them get the nutrients they need. Choosing high-calorie food and drink options can help. This could mean swapping semi-skimmed milk for whole milk, for example.

Your loved one should also take steps to avoid infection from foods. This includes eating foods within their ‘use by’ dates, washing fruits and vegetables properly, storing food safely, ensuring food is cooked in clean surroundings, and making sure meats are properly cooked.

Sometimes, you may want to get some takeaway or go out to eat. This is fine. Checking the food hygiene rating of the restaurants you’re eating at or ordering from can help you feel at ease about the safety of the food. A higher rating means safer practices, which is important when your loved one’s immune system is still recovering.

Find out more about eating well and tips to help with common eating problems.

If you're caring for a partner, it's normal for CAR T-cell therapy to affect your sex life. Your partner may have a low sex drive, feel too tired, or worry about changes to their body. These feelings are common and uncomfortable, and it’s okay to feel a little unsure about how to navigate them.

It can feel difficult and awkward to talk about these concerns, but talking with your partner’s hospital team can help. They can advise on when it’s safe for your partner to have sex. Usually, it's fine to have sex as soon as your partner feels comfortable.

During recovery, it is recommended that you practice safe sex to protect your partner from infection. It is advised that you and your partner use two methods of contraception for a year after treatment. This means that both of you must use contraception.

This is to protect your loved one from any infections while they are recovering, but also to protect yourself from unknown side effects of CAR T-cell therapy that may be passed on to you. Your loved one's hospital team can offer further personalised information and suggest the best contraception methods.

If you are planning to start a family, ask your loved one's hospital team for guidance. They can provide more tailored advice.

The Anthony Nolan website has further information about sex and relationships that can help.

CAR T-cell therapy-related costs can affect your finances. You may need help covering additional costs like energy bills, transport to and from appointments, parking, and more.

We have a page offering advice on CAR T-cell therapy-related financial support you may find helpful.

This information was developed in partnership with Anthony Nolan and has been accredited with the PIF TICK, the UK's only quality mark for trusted health information.

Last full review 2024. Next full review due 2027. We make factual updates to the information throughout this period.

Thanks to clinical nurse specialists Charina Ocampo and Maia Collins for checking the medical accuracy of this page.

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