COVID-19 and lymphoma

Current COVID-19 guidance 

As we learn to live safely with COVID-19, restrictions in all four nations have now been removed but guidance remains in place to help reduce our risk of catching COVID-19 and passing it on to others. These are even more important to those at higher risk of becoming seriously ill.

• Testing: If you develop symptoms of COVID-19 consider taking a lateral flow test, especially if you may be eligible for treatment. You can also ask visitors to take a test if that makes you feel more comfortable.
• Self-isolating: If you test positive for COVID-19 you are no longer legally required to self-isolate, but you are advised to stay at home and avoid contact with people for 5 days (3 days if under 18) after the test was taken. You should try to avoid people with weakened immune systems for 10 days.
• Hand washing: Regular hand washing is an effective way to help stop the spread of COVID-19. This works best with soap and water but a hand sanitiser that contains at least 60% alcohol can be used if soap and water is not available 
• Face masks: Face masks are no longer a legal requirement. If you meet up with people you don't normally live with you can choose to wear a mask, and you can also ask them to wear one. It is also sensible to wear a mask if you have to go out whilst you have symptoms of COVID-19.
• Space: You may still want to socially distance from people if that feels right to you. Distance Aware is a recognised symbol across the UK for people who wish to have a safe distance maintained.
• Fresh air: When sharing a space with people you don't live with consider opening a window or door to reduce the chance of spreading COVID-19 and other infections

Following the end to COVID restrictions, we may have different thoughts about the risk of COVID, and about the measures we want to take to protect ourselves and others. Some might be keen to return to a more 'normal' way of living, while others might be more anxious about mixing with other people. It is important that you do what you feel comfortable with. See our range of resources around emotional wellbeing and developing your own coping strategies to manage uncertainty.

More specific guidance is available for people in these higher risk groups in England, Scotland, Wales and Northern Ireland.

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COVID-19 vaccinations and boosters

Vaccines remain the best line of defence against COVID-19. Information on whether you are eligible for a vaccine and how to book wherever you live in the UK can be found below. 

Who can have a COVID-19 vaccine? 

On 1st July 2023 the vaccination programme in the UK was changed to seasonal boosters. People who are eligible are now able to have a Spring booster. 

Some people with a severely weakened immune system may need additional vaccinations at other times. Your specialist team or GP will be able to advise you if you think this applies to you.

Seasonal Boosters

The UK's COVID-19 vaccination programme is now mainly a seasonal booster campaign. Vaccinations are still the best way to offer protection from COVID-19, but this protection fades over time, which is boosted with the seasonal vaccinations.

You are able to get a Spring COVID-19 vaccination if you are at increased risk of getting seriously ill from COVID-19. Specific groups eligible are:

• residents in a care home for older adults
• all adults aged 75 years and over (this includes anyone who turns 75 by 30th June 2024)
• people aged 6 months and over who at increased risk of COVID-19.

People who are at increased risk of getting ill from COVID-19 includes those with a weakened immune system due to conditions such as lymphoma, having had treatments including chemotherapy, steroids, radiotherapy or a stem cell transplant, or from having their spleen removed. If you are not sure whether you are entitled to one speak to your GP or specialist team.

The Spring booster vaccinations started in April and will run to the end of June 2024.

What vaccines are available for COVID-19 in the UK?

The COVID-19 vaccines currently approved for use in the UK and being used this season are:

• Pfizer /BioNTech (Comirnaty®)
• Moderna (Spikevax®)

Anyone who gets COVID-19 can become seriously ill or have long-term effects (long COVID). The COVID-19 vaccines are the best way to protect yourself and others. Available vaccines give very high protection against COVID-19. They have been through a rigorous approval process to make sure they are safe and effective. 

The vaccines are suitable for nearly everybody. They can't be given to people who are allergic to any of their ingredients but most people with allergies (including food or penicillin allergies) can be vaccinated against COVID-19. Tell healthcare staff before you're vaccinated if you've ever had a serious allergic reaction (including anaphylaxis). They may ask what you're allergic to, to make sure you can have the vaccine.

If you are under 18, or have had a severe allergic reaction to one of the vaccinations offered, you may have to have a particular vaccination, otherwise you do not get to choose which one you have. 

Watch an NHS YouTube video explaining what's in the COVID-19 vaccines and how they work

How to book vaccinations

England

In England, you will be contacted if your record suggests that you are eligible for a vaccination, but you don't have to wait to be contacted. You can book by ringing 119, booking online or via the NHS app. If you live in a care home it will be arranged for you. More information can be found here.

Wales

In Wales, your local NHS health board will contact you if you are eligible for a vaccination. This will be between April and June. More information can be found here.

Scotland

In Scotland, you will be contacted with your appointment, or information as to how to book. This will either be via text, email, or a letter. More information can be found here.

Northern Ireland

In Northern Ireland you can have the vaccination at your GP surgery, local participating pharmacy, at your care home, or from your Health and Social Care (HSC) trust. More information as to how and where you can book is available here.

For all of the UK, if you are not contacted but think you are eligible speak to your GP or healthcare team.

What are the side effects of the vaccines?

As with any treatment, side effects from the vaccinations can happen but they are rare. The main side effects are:

• a sore arm from the injection
• feeling tired 
• a headache 
• feeling achy
• feeling or being sick. 

You may also get a high temperature or feel hot or shivery 1 or 2 days after your vaccination. Any side effects are usually mild and should not last longer than a week.

A rare side effect of the vaccination is swollen lymph nodes. This is because the vaccine causes an immune response which can cause nodes to become enlarged. They usually occur on the same side of the body that the vaccination was given and disappear quickly. If the swellings are more widespread, last for more than 2 weeks, or you have other symptoms or concerns, it could be due to something more serious so discuss it with your GP or specialist team.

There have been rare cases of inflammation of the heart (myocarditis) reported after COVID-19 vaccination. Most people who had this recovered following rest and simple treatments. 

Get urgent medical advice if you have any of these symptoms within a few days of being vaccinated:

• chest pain
• shortness of breath
• a fast-beating, fluttering or pounding heart (palpitations).

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COVID-19 Treatment

Treatments are still available for people with COVID-19 who are at the highest risk of becoming seriously ill. More information on these treatments, who is eligible for them and how they can be accessed can be found below.

Who can have treatment?

Treatment for COVID-19 is available for people with certain types of cancer, like lymphoma, who may be at higher risk of getting seriously ill from COVID-19, despite vaccination. They help to manage the symptoms and reduce the risk of you becoming seriously ill and needing hospitalisation.

A person’s risk will depend on many factors such as the type of lymphoma, the treatment they are having or have had, when this treatment was, and what other medical conditions they may suffer from. If you are unsure if you are eligible speak to your GP or specialist team will be able to offer advice that is specific to you. 

More guidance for which people are deemed at higher risk is available in England, Scotland, Wales and Northern Ireland.

What treatments are available in the UK?

The treatments available for people at high risk are:

• Nirmatrelvir plus ritonavir (Paxlovid)
• Sotrovimab (Xevudy)
• Remdesivir (Veklury)
• Molnupiravir.

Paxlovid, remdesivir and molnupiravir are all anti-viral medications. Sotrovimab is a biological medicine which sticks to the virus and stops it from getting into your lungs and causing an infection. 

Some of the treatments are given as tablets or capsules, whilst others as a drip into your arm. A doctor will decide which is most suitable for you. 

How do you get treatment?

If you are eligible for treatment, it is very important that this is started as soon as possible. How you access treatment depends on the Nation you live in.

England

In England you can find more specific information as to how to get treatment  from your local integrated care board (ICB) but in general the process is as follows:

1. Keep lateral flow tests at home. If you are eligible for treatment, make sure you always have a supply of lateral flow tests at home. You can collect these from your local pharmacy.
2. If you get symptoms take a test. Only take a test if you have symptoms, even if these symptoms are only mild. If you have no free lateral flow tests available at home, you can use a test that you have paid for.
3. If your test is positive call your GP surgery, 111 or specialist team. Call as soon as possible after your positive result. If they decide that you do indeed need treatment, they will assess you or refer you for an assessment. If the treatment, you need is in the form of tablets or capsules this will be prescribed and a friend or relative can collect it on your behalf. If the treatment needs to be given via a drip you will usually get this at your local hospital.
4. If your test is negative, do a test on the next two days. 

Scotland 

In Scotland treatment for COVID-19 is available from your local NHS Health Board. How you access this is as follows:

1. Keep lateral flow tests at home. If you are eligible for COVID-19 treatments you should always try to keep lateral flow tests at home. You can order a free pack online, or by calling 0800 008 6587.
2. If you develop symptoms take a test. Only take a test if you develop symptoms, even if these are only mild. Once you have taken the test make sure you report it either online or via 119.
3. If your result is positive contact your local health board. Call as soon as possible after your positive result. They will decide if treatment is suitable for you, which one is best and make all the arrangements for you to access it. The numbers can be found here. Remember to stay at home.
4. If your test is negative do another test on each of the next two days

Wales

In Wales the only treatments available are Paxlovid or sotrovimab. How you access them is as follows:

1. Keep lateral flow tests at home. If you are high risk and eligible for treatment you should keep a supply of lateral flow tests at home. You can order a test online for home delivery or by calling 119. 
2. If you develop symptoms take a test. As soon as you develop symptoms, take a test. If it is negative take another test on the next two days.
3. If your test is positive fill out a self-referral form. You can fill out the COVID-19 Antiviral Self-Referral Form online, call 111 or call your GP. You may be referred to your local health board’s antiviral service for an assessment.
4. If you are eligible for treatment you will be contacted within 48 hours. You may be offered treatment via a text message or telephone call. You have to reply to the text message with either ADVICE if you want to be contacted by a member of staff with more information on how to receive treatment, or DECLINE if you no longer want treatment.
5. Call 111 if you believe you are entitled to treatment but have not been contacted. If you have not been contacted within 48 hours but believe you should have been contact 111 who will then refer you to the National Antiviral Service
6. If you live in a care home the staff will contact your Health Board to arrange a different type of test

Northern Ireland

Treatment for COVID-19 in Northern Ireland is available via the five Health and Social Care (HSC) Trusts through the following process:

1. Keep lateral flow tests at home. If you may be eligible for COVID-19 treatments it is important that you stay alert to the symptoms of COVID-19 and always have a supply of tests at home. You can get these from your local pharmacy.
2. If you develop any symptoms take a test. As soon as you develop any symptoms, no matter how mild, take a test. It is important that you report the result especially if it is positive. If it is negative take another test on each of the next two days
3. You will receive a text message. If you are eligible for treatment you will receive a text message advising that your local HSC Trust will be told who will review your information
4. You will receive a follow-up phone call. If you are identified as being eligible for treatment your local HSC Trust will ring you to discuss treatment and how to obtain it. If you need tablets of capsules these can be taken at home, and you will be told how to get them. If you need it via a drip this will need to be given at your local hospital and you will be given all the information you need to get it.
5. If you do not get a text message or follow-up phone call contact your GP. If you do not get a text message or  phone call but you think you should have done speak to your GP or specialist team for help

How effective is treatment?

If you have COVID-19 and take treatment, the treatment will reduce your risk of developing severe symptoms and needing hospital admission. You are also more likely to recover quickly. 

In order to do this, it must be started within 5 days of the symptoms starting (Remdesivir can be taken within 7 days).

Is there anybody who can’t have treatment?

Not all the treatments available are suitable for all people and you will be assessed for the most suitable one. It is important with all the treatments that you mention any medications you are taken, even over the counter ones.

What are the side effects of treatment?

Common side effects to treatment are:

• diarrhoea
• nausea and vomiting
• changes in your taste. 

Sotrovimab can also cause an itchy rash or redness and warmth to your skin and Remdesivir can cause a headache in up to 10% of people.

In rare cases serious allergic reactions called anaphylaxis can occur.

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Helpful resources

• ICBBC (International COVID-19 Blood Cancer Coalition) Guide for immunocompromised blood cancer patients

However you’re feeling, we’re here for you. Our helpline services team can offer support in a range of ways. Contact us for support.

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