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Staying safe

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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.

Infections

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:

  • feeling hot or cold (a temperature that’s higher or lower than normal)
  • sore throat
  • cough producing green mucus
  • frequent watery poos (diarrhoea)
  • being sick (vomiting)
  • feeling dizzy or faint
  • headache or stiff neck
  • skin feeling red, hot or swollen
  • burning or stinging when you wee or passing a small amount
  • pain, redness or discharge (fluid) around the site of a central line
  • pain, itching or unusual discharge from your penis or vagina
  • new pain anywhere in your body
  • generally not feeling well.

We have more information about infections and reducing your risk.

Vaccinations you might need to get

Flu and pneumonia vaccines

You will probably be advised to have the flu vaccine each year. This is available on the NHS for anyone who is at increased risk of getting seriously ill from flu. If you haven’t been told about it, ask your healthcare team whether you should have it.

If there are people you spend lots of time with, it may be sensible for them to have the flu vaccine too. 

You may also need the pneumonia (pneumococcal) vaccine. This is a vaccine offered on the NHS for people at increased risk from pneumococcal infection. This includes people with a weakened immune system from cancer or cancer treatments.

Most people who need the pneumonia vaccine only need a single, one-off vaccination. But you may need a booster dose every 5 years if your spleen does not work properly. Ask your healthcare team if this applies to you.

These vaccines are important to keep you as safe as possible from infections.

Covid-19 vaccines

None of the approved covid-19 vaccines being offered to the general population are live vaccines, and so it is safe for people with weakened immune systems to have them. For up-to-date information, read our section about covid vaccinations for people with blood cancer, and how to book them.

Shingles vaccines

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.

Shingles vaccine

In the UK, there is a national vaccine programme to protect older people against shingles.

Currently, the shingles vaccine is offered to everyone in the UK once they turn 70.

The standard vaccine, Zostavax®, is a live vaccine. That means it 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 instead. This was licensed in 2021 and is suitable for people with blood cancer.

Changes from 1 September 2023

From 1 September 2023, the Shingrix® vaccine will be available to more people with blood cancer. Shingrix is the non-live vaccine for shingles.

Shingrix® will now be available to anyone who is immunocompromised (including people with blood cancer) aged 50 and above (with no upper age limit). We understand this applies across the UK (England, Wales, Scotland and Northern Ireland).

For everyone else, the shingles vaccine will start to be offered from the age of 60 rather than 70. Also from 1 September 2023, Shingrix® will be used for everyone else who is newly eligible, being the main vaccine used across the whole shingles vaccination programme.

This is a positive step for people with blood cancer, who can now get protection from shingles at an earlier age.

Shingrix® is given in two doses. The second dose should be given from 8 weeks to 6 months after the first one. You only need to do this once - you don't need to repeat the course again.

You should be invited by your GP for a shingles vaccine. If not, you can contact them to ask about it.

RSV (respiratory syncytial virus) vaccine

From September 2024, the NHS has started vaccinating people against respiratory syncytial virus (RSV) for the first time.

RSV is a common cause of coughs and colds, but can lead to serious lung infections including pneumonia which are highly dangerous in older people and young children.

Ahead of the winter, the NHS will be vaccinating older adults (and pregnant peeople) against RSV. This aims to prevent thousands of hospital admissions and RSV illnesses in older adults.

Am I eligible for the RSV vaccine?

The RSV vaccine is based on age. So regardless of whether you have blood cancer or not, you are eligible for the RSV vaccine from age 75.

If you're aged 75 to 79, you are eligible for the RSV vaccine. Your GP or local NHS team will invite you.

If you turn 80 on or after 1 September 2024, you are eligible for the RSV vaccine until 31 August 2025. Your GP will invite you.

If you are 74 or under, you are not eligible for the RSV vaccine yet, but you'll be invited when you turn 75.

If you turned 80 before 1 September 2024, you are not eligible for the RSV vaccine.

The vaccine will also be offered to pregnant people (from 28 weeks of pregnancy) to protect the baby for the first few months after they're born.

Questions about the RSV vaccine

If you are eligible for the RSV vaccine but have questions or concerns about having it, you should ask your medical team. The vaccine aims to prevent you contracting RSV illnesses, especially over the winter, which can lead to dangerous lung infections in older people. If you are immunocompromised because of blood cancer or its treatment, its even more important to protect yourself from infection.

As with all vaccines, if you have a weakened immune system, you might not get as much protection from the vaccine as other people. This is because vaccines work with your immune system to give you immunity. Although vaccines can be less effective in some people with blood cancer, they usually still offer some protection, and are seen as highly important in protecting you from avoidable infections.

The patient information leaflet that comes with the RSV vaccine mentions that if you have a bleeding problem, bruise easily, or if you have a weakened immune system, to check with a doctor, pharmacist or nurse before having the vaccine. This is routine advice for many vaccinations and does not mean the vaccine isn't safe for you. If you have any worries, check with your blood cancer team before getting the vaccine, so you can be reassured before your appointment.

If you aren't eligible for the RSV vaccine because you turned 80 before 1 September 2024, but are worried about your risk of infection, there is still lots you can do to protect yourself. Make sure you get all the other vaccines you are eligible for described on this page, and read our information about reducing your risk of all infections.

For more information, see the GOV.UK information about the RSV vaccine for older adults.

What to know about live vaccines

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.

If you ever need a blood transfusion

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.

Drugs that make you more sensitive to sunlight

Some treatments for blood cancer are photosensitive (sensitive to light). If you are on a photosensitive drug, you are more likely to suffer from burns and blisters when out in the sun. You will also have a slightly increased risk of developing skin cancer.

Photosensitive drugs include:

  • Hydroxycarbamide
  • Ruxolitinib
  • Methotrexate
  • Nivolumab
  • Prembolizumab
  • Cytarabine
  • Vinblastine
  • Co-trimoxazole and ciproflaxin
  • Tetracyclines

It is really important to look after yourself and your skin, especially if you are prescribed a photosensitive treatment. The NHS has advice about how to stay safe in the sun, and you can also read our sun safety tips here.

If you're worried or unsure about the treatment you're on, speak to your GP or hospital team or call our Support Service on 0808 2080 888.

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