As the COVID-19 (coronavirus) pandemic continues to affect the world, we want to make sure everyone affected by Waldenstrom’s macroglobulinaemia (WM) receives the information they need during this time. We closely monitor the latest government advice and guidance, and work with our WM specialist advisers to bring together the latest information about the disease and how it affects people living with WM.
The COVID-19 vaccine
The first vaccination against COVID-19 was approved in the UK in December 2020, and is incredibly positive news. The Government has recommended that clinically extremely vulnerable people should get the vaccine before the general population.
Although it is likely to make an important contribution towards protecting you from COVID-19, you should continue to follow the Government guidelines until further notice.
Dr Dima El-Sharkawi (Consultant Haematologist at Royal Marsden Hospital) and Dr Shirley D’Sa (lead WM clinician at UCLH) have also answered your top questions about the COVID-19 vaccine, that is being rolled out across the UK. Read our Q&A about WM and the COVID-19 vaccine here.
The Government has put into place a roadmap out of COVID-19 restrictions. So far, England has been able to follow this roadmap as planned. As of the 17 May, some restrictions are being lifted:
- People will be able to attend indoor events, take part in indoor sports, and meet other households indoors.
- Gathering limits will be eased. Outdoor gatherings will be limited to 30 people and indoor gatherings will be limited to 6 people or 2 households (each household can include a support bubble, if eligible).
- New guidance on meeting friends and family will emphasise personal responsibility rather than government rules. Instead of instructing you to stay 2m apart from anyone you don’t live with, you will be encouraged to exercise caution and consider the guidance on risks associated with COVID-19 and actions you can take to help keep you and your loved ones safe. There is specific guidance that you will need to follow even when you are with friends and family.
- All holiday accommodation will be open (including hotels and B&Bs). This can be used by groups of up to 6 or 2 households (each household can include a support bubble, if eligible).
- Support groups and parent and child group gathering limits will increase to 30 people (not including under 5s)
- There will no longer be a legal restriction or permitted reason required to travel internationally. There will be a traffic light system for international travel, and you must follow the rules when returning to England depending on whether you return from a red, amber or green list country.
For the full list of restrictions, please read the latest Government guidance.
As always, remember the guidance on controlling the spread of COVID-19, even if you have received the vaccine:
- HANDS – wash your hands regularly and for 20 seconds
- FACE – wear a face covering in indoor setting where social distancing may be difficult and where you will come into contact with people you do not normally meet
- SPACE – stay 2 metres apart from people you do not live with where possible, or 1 metre with extra precautions in place
Shielding for the clinically extremely vulnerable
People defined as ‘clinically extremely vulnerable’ have now been advised that they no longer have to shield from the 31 March. If you are in this group, you will have previously received a letter from the NHS or your GP telling you this. This means:
- You now must follow the same COVID-19 guidance as the rest of the population
- You are allowed to go to work
- You can meet up with people outside of your household
We understand that this may be worrying to people and have put together guidance on how to look after yourself physically and mentally with this change.
- You can find the latest government guidance on shielding and advice for clinically extremely vulnerable in England here.
- Find the latest guidance for clinically extremely vulnerable in other part of the UK: Northern Ireland, Scotland, Wales.
- The NHS will contact you directly if you are in the clinically extremely vulnerable group. If you think you should be added to the Shielded Patient list, or have any concerns we would encourage you to contact you GP or hospital clinician.
- I don’t think I should be considered as extremely vulnerable, but I have received a letter saying I am. What should I do? / I have received a letter saying I am considered as extremely vulnerable but I do not want to follow the guidance
- I am on chemotherapy. If I experience sweats / cough / shivering should I call NHS 111 or the chemotherapy care line?
- I have just been referred by my GP with suspected cancer. Should I attend my diagnostic appointment?
- What are the symptoms likely to be? / Will the symptoms be different because I have cancer? / What should I look out for? / What should I do?
- Is testing to establish if I have COVID-19 (serological testing) likely to be affected by clonal IgM in patients with WM?
- Should I have the flu (influenza) vaccine and is it safe?
- What does the COVID-19 vaccine mean for people with WM?
- What else do I need to know?
It is a virus that affects the respiratory system and can cause lung infections.
Like the common cold, COVID-19 infection usually occurs through close contact with a person with the virus, via cough, sneezes or hand contact. The most common ways of transmitting the virus is being studied at present.
There is some evidence to suggest that there is an increased risk of contracting COVID-19 infection in adults with cancer, due to their lowered immunity. They may also experience more severe COVID-19 infections for the same reason.
At present, Public Health England (PHE_ and other NHS bodies are taking a cautious view on all patients affected by bone marrow diseases including those with lymphoma and placing them in the ‘clinically extremely vulnerable’ category. This is a sensible approach to keep people safe.
It should be noted that the general advice we are giving is relating to NHS England, and that the devolved nations have different processes. Please refer to separate guidance for Wales, Scotland, and Northern Ireland.
I have WM but I have NOT been identified as "clinically extremely vulnerable" by the NHS: what can I do?
Your hospital clinician or GP should have added you to the Shielded patients list and you should have received a letter entitled 'Important advice to keep you safe from coronavirus’. The criteria for cancer patients were carefully defined, based on those with greatest clinical risk.
You can find out more about who is classed as clinically extremely vulnerable on the NHS Digital website.
If you are still concerned, you should discuss your concerns with your GP or hospital clinician.
I don’t think I should be considered as extremely vulnerable, but I have received a letter saying I am. What should I do? / I have received a letter saying I am considered as extremely vulnerable but I do not want to follow the guidance.
The criteria for cancer patients were carefully defined, based on those with greatest clinical risk. Some cancer patients may receive a letter because they have other conditions that place them in the highest risk cohort.
We understand that the updated guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19 are difficult, both for you and for your family members and / or carers.
However, this is guidance and whether you follow the guidance or not is a personal decision for you to make. You may decide, having weighed up the risks and the implications of ‘shielding’, that you do not want to follow the guidance. Before deciding, we would ask you to discuss the matter with your GP or hospital specialist and those that may provide care for you. This may be particularly relevant for patients who are receiving end of life care. Please do talk to somebody before you decide what to do.
If you are unsure of your risk and what measures you should be taking, you should speak with your hospital specialist. If this is not possible, you should contact your GP.
Absolutely not. This is about identifying those people most at risk so they can take measures to protect themselves from developing serious illness from COVID-19. It is also about making sure they can access care and support during this time, including social care and help with practical needs such as getting medicines.
If you fall ill from COVID-19, or any other condition, and require treatment in hospital, you will still be treated as normal and will not be denied any medical intervention because you are in the ‘shielding’ group.
Whilst the rest of your household are not required to adopt protective shielding measures for themselves, we would expect them to do what they can to support you in keeping well. Further government guidance for households with grandparents, parents and children living together where someone is at increased risk, or has possible or confirmed coronavirus (COVID-19) infection can be found here
If the rest of your household stringently follow advice on social distancing and increased hygiene measures to minimise the risk of spreading the virus within the home by following the advice given, there is no need for them to also shield alongside you.
WM is an indolent (slow or chronic) lymphoma with distinct features and treatment options.
Just having the disease may increase the risk of lowering immunity, because people with WM often produce fewer antibodies than normal. This may not be significant under normal circumstances but in this time of COVID-19, we are assuming that everyone on active monitoring ( or the so-called ‘watch and wait’) is potentially at risk.
This is why people at any stage of their disease are included in the extremely vulnerable category.
Many treatments used in WM do lower the immune system but it is not known how long this effect persists or how they may affect the body's response to COVID-19.
- This is because testing of the immune system in routine practice is not feasible and not required in most cases.
- During chemotherapy treatment, the white blood count (the neutrophils) are closely monitored; this usually recovers well once chemotherapy is finished and is no longer a significant factor.
- Newer agents / targeted therapies like ibrutinib may affect the immune system in a different way to chemotherapy (for example bendamustine or DRC) and monoclonal antibodies such as rituximab. How ibrutinib and similar treatments affect the body’s response to COVID-19 is not yet known.
Doctors make certain assumptions based on how patients in this group are affected by other more familiar viral infections.
- Illnesses such as influenza (for which vulnerable persons are offered the annual flu vaccine).
- Herpes viruses that cause illnesses such as chicken pox and shingles (varicella zoster) or cold sores (herpes simplex) for which tablets like acyclovir and valaciclovir can be used for prevention and treatment.
- Under normal circumstances, a pragmatic approach is made regarding the use of preventative measures such as anti-viral meds (acyclovir). Patients are thought to be at highest risk in the first three months after completion of therapy. This risk diminishes in the following six to twelve months.
- Note that acyclovir does not have activity against COVID-19.
- None of this is an exact science and varies from person to person, so in the current crisis, until we know more, people at any stage of their disease are included in the extremely vulnerable category.
Please do not stop any treatment for your WM without discussing this with your doctor, or a member of their team.
People at any stage of their disease are included in the extremely vulnerable category.
Different combinations (such as bendamustine, DRC and fludarabine) and different strengths of treatments (such as chemotherapy given for a stem cell transplant) suppress the immune system to varying extents and for different durations.
Those on active treatment are likely to see a change in their treatment plan so as to minimise their immune suppression as swiftly as possible, preferably without adversely affecting the outcome that is intended from using the chemotherapy in the first place.
I am on chemotherapy. If I experience sweats / cough / shivering should I call NHS 111 or the chemotherapy care line?
You should call the chemotherapy care line. If the chemotherapy care line is not available in your area, please speak to your clinical team about who you should call in this situation.
The point at which treatment is commenced will be delayed if possible; active monitoring is the preferred strategy whenever possible.
- Treatment will be given in symptomatic patients, but if the symptoms are mild and / or tolerable, treatment is likely to be deferred, alongside close monitoring.
- For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in symptomatic fatigue), intravenous iron infusions could be considered. This requires one or two day case visits to the hospital but if this results in a rise in the haemoglobin, the need for chemotherapy could be deferred for a number of months until the lockdown is lifted.
- Some patients may be considered for erythropoietin, also known as EPO (a weekly injection to stimulate red cell production in the bone marrow) as a way to counteract anaemia.
- If your plasma viscosity is a main concern, plasma exchange may be commenced to remove excessive IgM from the blood and ‘thin’ the blood as a holding measure until chemotherapy starts. This would entail a visit every two to four weeks to a centre that can carry out the procedure. Plasma exchange does not itself suppress the immune system.
Read more about WM symptoms here
- Less immunosuppressive chemotherapy treatments (for example cyclophosphamide instead of bendamustine) may be chosen or the number of intended cycles may be reduced to limit visits to the hospital.
- Oral chemotherapy options may be given instead of intravenous options to facilitate self-isolation.
- Rituximab maintenance will be stopped to limit the burden of travelling to healthcare centres and the risk of immunosuppression.
- It is not known whether these changes would affect the eventual outcome of treating the disease. However, there is widespread agreement that it is crucial to keep vulnerable people isolated as far as possible at this stage, Once regulations about this change, treatment choices will be revisited by the treating team.
There are currently no medicine shortages as a result of COVID-19. The country is well prepared to deal with any impacts of the coronavirus and we have stockpiles of generic drugs like paracetamol in the event of any supply issues.
The Department of Health and Social Care is working closely with industry, the NHS and others in the supply chain to ensure patients can access the medicines they need and precautions are in place to prevent future shortages.
There is no need for patients to change the way they order prescriptions or take their medicines. Patients should always follow the advice of doctors, pharmacists or other prescribers who prescribe and dispense their medicines and medical products. The NHS has tried-and-tested ways of making sure patients receive their medicines and medical products, even under difficult circumstances. If patients order extra prescriptions, or stockpile, it will put pressure on stocks, meaning that some patients may not get the medicines or medical products they need.
In the absence of evidence to guide us, treatment decisions should be based on your general health, any other illnesses, the response already achieved so far, and balancing this against the risk of developing COVID-19 infection.
- It is thought that persons on BTK inhibitors (ibrutinib, acalabrutinib and zanubrutinib) should be continued on treatment. Stopping treatment has a high risk of causing IgM flare, increasing risk of symptoms such as fever (which can be confused as COVID-19 related) and high blood viscosity, which may trigger the need for plasma exchange.
- For patients who have already achieved a good response to rituximab-chemotherapy, a reduced number of cycles may be considered. Alternatively, a switch to less immunosuppressive treatment may be considered.
- Maintenance rituximab will be discontinued because of the increased risk of immunosuppression, and of the requirement for travel to the hospital.
- Ultimately, in order to err on the side of safety, we need to balance risks versus benefits.
When possible, commencement of treatment will be delayed if mild, tolerable symptoms are present with continuation of close monitoring.
- For patients presenting with anaemia (low haemoglobin) as a main problem (resulting in fatigue or shortness of breath), alternative ways of boosting haemoglobin such as erythropoietin injections (can be taken at home) or intravenous or oral iron may be used as a holding measure. Intravenous iron given once or twice would need a visit to a hospital but if this results in a rise in the haemoglobin, further visits for chemotherapy could be put off altogether for a number of months.
- Stem cell transplants are not taking place at present. If you were planned for one, an alternative holding measure may be considered.
Is testing to establish if I have COVID-19 (serological testing) likely to be affected by clonal IgM in patients with WM?
Blood tests for COVID-19 are being developed to identify COVID-19 specific IgM antibodies to look for evidence of infection and will not be affected by the total IgM or paraprotein levels.
Such IgM antibodies are the ‘first responders’ to any infection that we encounter - they are produced as part of the early immune response and so can help to confirm whether we have been infected. This IgM is different to the IgM produced by WM cells, and can still be picked up by the test despite the presence of WM-related IgM. While such testing is already in widespread use to detect a range of infections, a specific test for COVID-19 has needed to be developed in the past weeks.
One concern about this test in WM patients is that previous treatments such as rituximab (which targets B cells whose job it is to produce antibodies) might result in not being able to mount an immune response to COVID-19, and there is a possibility of a negative serological test even if they were exposed to the virus (having the virus but with a negative test result).
The National Institute for Health Research (NIHR) has issued guidance on clinical trials, recognising the need to prioritise research on COVID-19 itself, and that many clinical research teams will be asked to redeploy to help with providing patient care.
The clinical team will seek advice from the sponsors who are running the trial about adapting the care of patients who are on clinical trials.
People already having cancer treatment as part of clinical trials may be able to continue their treatment if it is safe to do so, but hospitals are trying to reduce the number of times patients attend for tests, so the arrangements for people on trials may be changed for safety reasons such as:
- supply of medication for longer durations to reduce patients having to come into the hospital
- postponement of visits to the hospital for trial-related tests such as bone marrow biopsies and scans
- visits that are necessary on safety grounds, in order to continue receiving the trial medication (for example blood tests or ECGs - heart tracings to ensure it is safe to continue) may need to go ahead as planned but the possibility of more local provision may be possible.
Some trials have stopped recruiting new patients. You should contact your clinical team with questions about your individual treatment including any trials you are part of.
Several supportive measures are being implemented to minimise risk and reduce the chance of hospital admission.
- Growth factor (G-CSF) injections are likely to be used in patients who are receiving chemotherapy to reduce the risk of neutropenia (low white cell count). The clinical team will decide how long and how often these injections may be needed. They are given subcutaneously (under the skin) and this can be done at home.
- Some patients may receive preventative antibiotics if they are already experiencing recurrent infections.
- Where indicated, routine vaccination against influenza and pneumococcus should be continued despite reports of impaired responses.
Some people are already receiving antibody replacement because they experience repeated infections. This is usually given once a month as a day case in the hospital. Should this continue?
- Guidelines were issued by the NHS on 27 March 2020. A decision will be made on a case-by-case basis considering the balance of risk and benefit. Continuing to provide IVIG as a day case is preferred as it seems contrary to remove a protective measure at a time of pandemic.
- The risks from travelling to a hospital however may be too high in some cases. Where this is not appropriate, the clinical team will consider how attendance can be minimised.
- Dependent on patient circumstances and hospital capacity, short-term antibiotics may be given instead (to replace immunoglobulin therapy).
- The dose of immunoglobulin may be changed to allow the increasing interval between attendances.
- For suitable patients the use of subcutaneous immunoglobulin may be used instead. This will depend on the capacity of the centre to deliver a training package to patients to self-administer the treatment and receive deliveries at home.
All hospitals in the UK are working on and have implemented contingency measures so as to minimise the need for all patients, especially the extremely vulnerable, to leave their home. These include:
- home delivery of oral medication where possible (exact arrangements vary between regions due to geographical and infrastructure differences)
- changing intravenous to oral treatments if possible
- dispensing longer periods of oral medications
- reducing the number of cycles to be given, especially if there is already evidence for a good response
- considering treatment breaks or pauses while the risk of COVID-19 is particularly high
- using growth factor injections to reduce the chance of low blood counts and reduce admission rates
- deferring supportive therapies (such as for bone-strengthening treatments like Zometa)
- these measures are unprecedented and are being brought in specifically for this pandemic. It is not known if these changes might alter the eventual treatment outcome, but it makes sense to take these important safety steps now. Once the pandemic is under control, clinical teams will review the treatment strategy once more.
It is important that you seek clinical advice if you have any worrying symptoms. GP surgeries have been advised to offer online consultations and remote triage so that people do not have to attend in person unnecessarily. Please do contact your GP surgery directly if you are worried about a possible symptom - this could be anything that you would have normally consulted your GP about, such as a new lump, chest pain, symptoms suggestive of a stroke.
How can I safely access NHS services outside of my home?
The NHS has already significantly changed the way it operates in order to safely treat and care for those who are at highest risk of severe illness were they to contract COVID-19.
If your GP / hospital specialist asks you to attend an appointment at the GP surgery / clinical / hospital, you can contact them to ask them about the specific infection control arrangements in place locally and to discuss any concerns you might have.
NHS England wrote to your GP or hospital clinician, asking them to review ongoing care arrangements for all patients who were shielding. As a result of this review, many of you will have received regular care or treatment at home, or had hospital appointments cancelled or postponed, if clinically appropriate to do so.
Wherever care at home is not possible, the NHS has been asked to provide safe care in infection-controlled settings, in line with latest infection prevention and control guidance.
NHS Volunteers can also help with transport to a medical appointment, please ask your healthcare professional to organise this.
Can carers visit to provide medical support?
Yes, any essential carers or visitors who support you with your everyday needs can continue to visit unless they have any of the symptoms of coronavirus.
Essential carers coming to your home should follow advice on good hygiene: wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there (or use hand sanitiser), avoid touching their face, catch any coughs or sneezes in a tissue (or their sleeve), and put used tissues immediately in the bin and wash their hands afterwards. They should observe social distancing guidelines where close or personal contact is not required and where this is possible.
Further information and guidance on home care can be found at: www.gov.uk/government/publications/coronavirus-covid-19-providing-home-care
I have just been referred by my GP with suspected cancer. Should I attend my diagnostic appointment?
It is important for new symptoms that could be due to a new cancer diagnosis are assessed promptly. Please discuss with the clinical team at the hospital. In the event of any disruption, hospitals will always make decisions to prioritise tests for those most in need.
- Only call NHS 111 if you cannot get help online
- Make sure you tell the person you speak to about your WM and treatment.
- If you are receiving chemotherapy treatment, phone your hospital chemotherapy helpline so they are aware.
- In an emergency, call 999 if you are seriously ill.
- To protect others, do not go to places like a GP surgery, pharmacy or hospital. Please stay at home.
What are the symptoms likely to be? / Will the symptoms be different because I have cancer? / What should I look out for? / What should I do?
The NHS outlines the common symptoms of coronavirus on its website.
If you are experiencing symptoms of any infection or illness, including coronavirus, you should contact your cancer team as you would normally. You can do this as well as calling NHS 111 for advice about coronavirus symptoms.
It is not yet known whether reinfection is possible, although many experts think it is unlikely.
If your clinician is diagnosed with coronavirus and you have not seen them within two weeks, then you are unlikely to have been exposed to coronavirus. Clinicians who care for a shielding patient should wear a mask during the consultation to protect you during the consultation along with gloves and a plastic apron if they make contact with you.
Health professionals are working to contact anyone who has been in close contact with people who have coronavirus. If you are concerned about the impact this will have on your treatment, contact your hospital for advice.
Vaccination against seasonal flu offers WM patients, who often have weakened immune systems, some protection against the most common strains of flu. The flu vaccine is therefore recommended in all and preferably also family members of WM patients to keep the flu levels low in the community.
The flu vaccine is a killed vaccine so does not pose a risk to patients (although some may experience flu-like symptoms). In patients with low immunity due to the WM itself (low antibody levels) or treatment, we do not know how much protection will come from the flu jab, but it is still recommended.
The best time to have the flu vaccine is in the autumn before flu starts spreading and it usually takes 10 to 14 days for the vaccine to work. If you are currently on treatment, your doctor or specialist will be able to discuss when the best time to have your vaccination is.
Additional changes have been made to make sure it’s safe for you to have the flu vaccine at GP surgeries and pharmacies. These changes include social distancing, hand washing and wearing protective equipment.
Further information and advice on the flu vaccine can be found via the NHS website here
If you have any further questions, please don’t hesitate to get in touch with us.
We know that many people still have questions about the COVID-19 vaccine, and what it means for them as someone affected by WM.
We’ve worked with our WM specialists; Dr Dima El-Sharkawi (Consultant Haematologist at Royal Marsden Hospital) and Dr Shirley D’Sa (lead WM clinician at UCLH) to put together some answers to those questions you might be asking right now. Whether you have the vaccine or not is ultimately your choice, but we hope the information here will help you make an informed choice.
We currently are in an unusual time where there is little evidence on which to base decisions at a time where things are changing fast.
- Each day, observations around the world being made during this pandemic will be of immense help in the future.
- Clinical trials to treat COVID-19 are well underway.
- There is an unprecedented amount of collaboration going on between doctors and scientists across the globe to share information to make it safer to care for patients in this difficult time. The picture is changing on a daily basis.
- All NHS Hospitals are working hard to put new practices in place in response to guidance that is coming from the Department of Health and Public Health England.
- WM patients and advocates play an important role in the dissemination of information.
- WMUK is on a mission to regularly update the WM community with fact-checked information.
- We would recommend speaking to your specialist team if you have any questions or worries about coronavirus and WM.
- Please do not travel unless it is essential.
It is normal during these uncertain and unusual times to feel anxious or feel low. Follow the advice that works for you in the guidance on how to look after your mental health and wellbeing during coronavirus (COVID-19).
If you feel you need to talk to someone about your mental health or you are looking for more support for someone else, we would urge you to speak to a GP and seek out mental health support delivered by charities or the NHS.