Important things to know if you’ve been diagnosed with blood cancer.
Watching out for changes
If you notice any new symptoms or side effects at any time, always let your healthcare team know straight away. Ask your healthcare team if there’s anything in particular you should watch out for.
It’s really important to watch out for infections if you’ve been diagnosed with blood cancer, because a minor infection could become serious.
If you have symptoms of an infection, contact your healthcare team or a doctor straight away. Symptoms of an infection include:
- fever (temperature higher than 38°C)
- shivering and sweating
- achy flu-like symptoms
- sore throat and cough
- frequent watery poos (diarrhoea)
- generally not feeling well.
We have more information about infections and reducing your risk.
You will probably be advised to have the flu vaccine each year. If you haven’t been told about it, ask your healthcare team whether you should have it. You may also need the pneumonia vaccine.
These vaccines are important to keep you as safe as possible from infections. If there are people you spend lots of time with, it may be sensible for them to have the flu vaccine too.
Live vaccines are vaccinations that contain a weakened but live version of the illness they protect against. Live vaccines should not be given to people whose immune system isn’t working properly, either due to blood cancer or its treatment, because they can cause infection.
Examples of live vaccines are the nasal spray flu vaccine, MMR (measles, mumps and rubella), rotavirus, BCG, oral typhoid, chickenpox and yellow fever. The shingles Zostavax® vaccine is also live, but there is now a non-live alternative called Shingrix® (see "Shingles" below).
If you are getting any vaccination, always mention your diagnosis and that you’re not allowed a live vaccine.
People you’re in close contact with should still get all of their vaccinations, including live vaccines. If you are in close contact with someone who’s recently had a live rotavirus vaccine, then regular hand washing and maintaining good hygiene, particularly during close contact, food preparation, or nappy changing if a baby has been vaccinated, should minimize any small risk.
If someone you know has the shingles vaccine and develops a rash afterwards, avoid contact with the rash.
Shingles is the infection of a nerve and the skin around it. It can affect you if you’ve had chickenpox, even if you had it a long time ago, as it’s caused by the same virus, which can lie dormant in your body for years. You’re more likely to get shingles if your immune system isn’t working well – for example, if you have blood cancer.
Shingles has some quite obvious symptoms. If you think you have it, let your GP or specialist know as quickly as possible. Symptoms include:
- a rash – with blisters filled with fluid, which burst and form sores that crust over (the rash is usually confined to one side of the body)
- an itching, tingling or burning feeling
- pain where the rash is.
You can’t catch shingles from someone who has it, but you can catch chickenpox from someone with an open shingles sore, if you haven’t had chickenpox already.
In the UK, there is a national immunisation programme to protect older people against shingles. Shingles vaccination is routinely offered at age 70, although you can have it up to age 79.
The standard vaccine, Zostavax®, is a live vaccine and is not suitable for anyone with a weakened immune system (see "Live vaccines" above). If you have blood cancer and are in your 70s, you should be offered the Shingrix® vaccine. This was licensed in 2021 and is suitable for people with blood cancer. Shingrix® is given in two doses.
For some people with blood cancer, if they ever need a blood transfusion, they must receive irradiated blood (blood that’s been treated with radiation).
This is because of the risk of transfusion-associated GvHD (graft versus host disease) – where your immune system rejects the transfused blood.
If this applies to you, you should be given an alert card to carry at all times.
People who are at risk of transfusion-associated GvHD and need irradiated blood are:
- All adults and children with Hodgkin lymphoma at any stage of the disease – for life.
- People who’ve had an allogeneic (donor) stem cell transplant – from conditioning therapy until six months post-transplant, or indefinitely if GvHD is present.
- People who will be having an autologous transplant (using their own stem cells) – before and during harvesting of their stem cells or bone marrow, and from conditioning therapy until three months post-transplant (or six months post-transplant if total body irradiation was used).
- Blood stem cell or bone marrow donors – prior to or during harvest.
- People who’ve been treated with fludarabine, cladribine, deoxycoformicin, alemtuzumab, bendamustine or clofarabine.
Talk to other people affected by blood cancer
Hear from and connect with people who understand.