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COVID-19 FAQs

General

Do myeloma patients have an increased risk of COVID-19 infection?

Myeloma patients, even those in remission, are considered extremely vulnerable to COVID-19. This is because myeloma affects how well the immune system can respond to infection. The risk of infection is further increased in patients who have active (symptomatic) myeloma and are undergoing myeloma treatment.

Do patients with AL amyloidosis have an increased risk of infection?

Patients with AL amyloidosis are at an increased risk of infection compared with the general population. The risk is further increased for those on treatment.

Do patients with smouldering myeloma have an increased risk of infection?

Patients with smouldering myeloma have an increased risk of infection, however, the risk is not as great as those with active myeloma or those on treatment for their myeloma.

Do MGUS patients have an increased risk of infection?

Patient with MGUS (monoclonal gammopathy of undetermined significance) only have a very small increased risk of infection compared with the general population.

What is the best way to protect myself from infection?

The best way to protect yourself from COVID-19 is by minimising contact with people outside your household, ‘extended household’ or ‘support bubble’ and by following good personal and household hygiene.

Where possible you should:

  • Stay two metres away from people not in your household, ‘extended household or ‘support bubble’
  • Regularly wash your hands
  • Ask others to cover their mouth and nose with a tissue or sleeve when they cough or sneeze
  • Avoid touching your face
  • Clean frequently touched surfaces
  • Use separate towels
  • Use a separate bathroom or clean the bathroom after every use
  • Ensure all kitchenware is cleaned thoroughly

Should I be shielding?

Shielding has been paused in the UK. This means you are no longer advised to shield but to follow the general social distancing advice.

Everyone with a high or very high risk of COVID-19 should continue to take precautions by following the guidance on good personal hygiene, household hygiene and minimising contact with people outside their household, ‘extended household’ or ‘support bubble’.

You can read the latest advice in England, Scotland, Wales and Northern Ireland in our What measures should I be following? post.

Do I need to wear a face mask?

Face coverings are mandatory in most public spaces (e.g. shops, museums and libraries), whilst using public transport and whilst in a hospital as a visitor or outpatient

You can read the full guidance on the use of face coverings in England, Scotland, Wales and Northern Ireland on their government websites.

Should I visit my consultant if I think I have contracted coronavirus?

If you suspect you have coronavirus or have a high temperature, cough and/or loss of smell or taste you should not go to your appointment or visit your GP. You should contact your healthcare team or NHS 111 (by phone or online) in the first instance for advice on what to do next.

Patients in Scotland are advised to call their GP or, if their call is out of hours, contact NHS 24 on 111. Patients in Wales are asked to call 111 (if available in their area) or call 0845 46 47. Patients in Northern Ireland are asked to call 0300 200 7885.

If you contact NHS 111 you should still contact your healthcare team as soon as possible to make them aware of your situation.

Vaccines

Is there a COVID-19 vaccine?

There are several COVID-19 vaccines in development.

One vaccine, the Pfizer-BioNTech vaccine, has been approved for use in the UK by the Medicine and Healthcare Products Regulatory Agency (MHRA). People across the UK will start to receive the vaccine through the NHS from December 2020.

Two other vaccines, the Moderna vaccine and the Oxford-AstraZeneca vaccine, have released promising results from clinical trials.

Should myeloma patients get the vaccine and will it be effective?

The current advice from the Joint Committee for Vaccination and Immunisation (JCVI) is that anyone who is offered the Pfizer-BioNTech vaccine should have it.

From previous vaccine research, we know that medications, immune function, and pre-existing health conditions can affect how some vaccines work. Therefore, the COVID-19 vaccine may not be fully effective in immunocompromised patients or people having immunosuppressing treatment. Following vaccination, patients should continue to follow infection prevention measures, such as frequent hand washing and social distancing, unless told otherwise by their doctor.

Will myeloma patients be prioritised for the COVID-19 vaccine?

The JCVI has published guidance detailing how the COVID-19 vaccine should be prioritised.

Clinically extremely vulnerable people, including myeloma patients, are in the 4th priority group and should be offered the vaccine after people who live or work in care homes, frontline health and social care workers and those aged over 75.

Will carers be prioritised for the COVID-19 vaccination?

Earlier guidance published by Public Health England for healthcare professionals indicated that adults living in the same household as myeloma patients would be eligible for a vaccine, although the priority they would be given was not made clear. However, new guidance from the JVCI, indicates this position may have changed.

The latest JCVI guidance has not listed carers of clinically extremely vulnerable patients as a priority group for the vaccine because they feel the evidence is insufficient to justify their prioritisation. This is because the impact of vaccination on COVID-19 transmission is unknown, so it is unclear if vaccinating carers would provide any additional protection for clinically extremely vulnerable patients. The JCVI will review this position as more data are collected throughout the vaccination programme.

When will myeloma patients receive the vaccine?

Vaccines will be given in line with the priority list. Therefore, unless you are included in a higher priority group due to your age or employment, you will need to wait until the programme reaches the clinically extremely vulnerable group. When it is your turn to receive the vaccine, you will be contacted by the vaccination service. You should not contact your GP to find out when you will get vaccinated. Each group may take weeks, or possibly months, to vaccinate fully, so you may not hear from the vaccination service for a while. When you are contacted by the vaccination service you should speak to your haematologist to ensure you are having it at the most appropriate point for your myeloma and treatment.

Treatment

Will my treatment change now shielding has been paused?

Your treatment plan is continually reviewed by your healthcare team to ensure you receive the right treatment. Although the risk of COVID-19 is getting lower, your team will only change your treatment if it is the best course of action in your individual situation.

When making treatment decisions your team consider your preferences and whether the benefit of the treatment outweighs the associated risks. As part of this discussion, they will also consider the risk of COVID-19.

Your healthcare team are best placed to talk with you about your treatment plan. They will discuss any potential changes and the reasons for the changes with you.

Have high-dose therapy and stem cell transplantations (HDT-SCT) restarted?

HDT-SCTs have restarted at many hospitals. Some HDT-SCTs may be postponed due to hospital capacity and the risks associated with COVID-19. Decisions regarding HDT-SCT will be carried out on a case-by-case basis by the patient’s healthcare team.

What are hospitals and healthcare teams doing to reduce the risk of COVID-19 infection?

To reduce your risk of COVID-19 infection your team will be looking for ways to limit face-to-face contact and reduce your time in hospital. They may:

  • Use telephone or video consultations
  • Change your treatment to one that can be given at home or as an outpatient
  • Change the frequency, timing and location of any blood tests or check-ups
  • Ask you to come to your appointment alone
  • Ask you not to come early to the clinic

Why has my treatment has been moved to a different location?

The NHS are continuing their working to ensure that essential cancer care continues during the COVID-19 pandemic. Your treatment plan may be adjusted to enable this. This includes changing the location of treatments, blood tests or appointments to minimise your risk of infection.

Can I take someone with me to my appointment?

We would recommend you check with your healthcare team. Many hospitals are encouraging family members/friends not to attend clinic appointments to limit the number of people in and around the hospital. If possible, family members/friends should wait in the car or outside the hospital away from other people. You should speak to the healthcare team to confirm their arrangements.

If you would usually attend with a patient and are concerned about missing information, the patient can ask to record their appointment on their phone (or other recording devices), take in a list of questions to ask, write notes and/or ask their doctor or nurse to make a note of the key points.

Are there any clinical trials I can join?

Recruitment to clinical trials has restarted and new trials are beginning to open. However, trial recruitment status may vary between hospitals due to differences in clinical research capacity. If you are interested in joining a clinical trial, you should ask your healthcare team for details of clinical trials currently recruiting in your area.

You can also check the Myeloma UK Trial Finder for a list of trials registered as recruiting in the UK

I am currently on a clinical trial. Will my treatment be stopped?

All patients currently on clinical trials should continue to receive treatment as per the trial protocol unless otherwise specified by their healthcare teams.

Are cancer treatments being rationed?

The NHS are not advising widespread changes to cancer treatment and are working to ensure that essential cancer care continues during the COVID-19 outbreak. Your treatment plan may be adjusted to enable this.

Your healthcare team are best placed to talk with you about your treatment plan. They will work with you to determine the best course of action in each individual situation and can advise if there are any changes.

Is there a shortage of cancer treatment?

There are currently no medicine shortages because of the COVID-19 outbreak. The government is working closely with drug manufacturers, the NHS and others in the supply chain to ensure cancer patients get the essential treatments they need.

Work and School

Do I have to go to work?

The general advice for England, Scotland, Wales and Northern Ireland is to work from home where possible.

If this is not possible clinical extremely vulnerable people should follow the advice for their local area.

In England, if you can’t work from home, you should not attend work. Speak to your employer about any support available to you.

In Scotland, Wales and Northern Ireland, your employer must ensure you can follow strict social distancing measures whilst at work and when travelling to and from work. Following a workplace risk assessment, your employer should make the necessary adjustments to your workplace to protect you. If your workplace can’t be made safe, you should talk to your employer about the options available to you. You may want to discuss whether you need a fit note with your GP or consultant.

No matter where you live, we would recommend that you have a conversation with your employer. They may be able to offer additional support, change when you work, the tasks you need to do, or allow you to work from home.

Does my family have to go back to work?

If someone you live with is working or has been asked to return to work, we would recommend that they speak to their employer. Their employer may be able to offer additional support to help them follow strict social distancing measures by changing when they work or the tasks they need to do. If the person you live with doesn’t want to return to work they can ask their employers for some time off. Everyone is entitled to time off to look after dependants in an emergency – this includes a partner, parent or other family members.

The time off is unlimited but employers are not obliged to pay you. It will depend on their policy. If an employer won’t pay you for this time, they might agree to let you use holidays.

Do my children have to go to school?

Children who live with someone who is clinically extremely vulnerable, but who are not clinically extremely vulnerable themselves, should still attend school.

COVID-19 Tests

When will I be tested for COVID-19?

COVID-19 tests are available to everyone with COVID-19 symptoms (fever, new continuous cough and/or loss of taste or smell).

As a myeloma patient without COVID-19 symptoms, you could be tested for COVID-19:

  • If you live with someone with COVID-19 symptoms
  • Before attending an appointment for essential treatment or care (especially if you are attending a COVID-19 free centre)
  • Before being admitted to hospital for treatment or care

How can I get tested?

You can get a COVID-19 test through a healthcare professional, your employer, or a self-referral.

In England, COVID-19 tests are carried out at NHS facilities, regional testing sites, and mobile testing units. Home-testing kits are also available.

In Scotland, Wales and Northern Ireland, tests are carried out at designated drive-through test centres. Limited home-testing kits are also available.

What does the COVID-19 test involve?

The test involves taking a swab of the nose and the back of the throat. The swab is either taken by the person (self-administered) or by someone else (assisted).

Who can self-refer for a COVID-19 test?

If you have COVID-19 symptoms you can book a COVID-19 test through the NHS Ask for a coronavirus test webpage.

If you are an essential worker or have an employer verification number you can book a test using the UK Government online portal.

How do I get a home-testing kit?

You can order a home-testing kit by completing a self-referral form on the UK Government online portal.

Each kit comes with comprehensive instructions on how to take the swab yourself and what to do with it.

A Royal Mail courier will come the day after your kit arrives to collect the completed swab and take it to the lab.

What should I do if I test positive for COVID-19?

If you test positive for COVID-19 you will be given instructions by the NHS on the things you need to do to help prevent the spread of COVID-19. This will include continuing to self-isolate, informing anyone you have interacted with, and providing details of places you have visited.

You can read the full details of the contact tracing processes for England, Scotland, Wales and Northern Ireland on their government websites.

We would also recommend that you tell the healthcare teams treating your myeloma, myeloma symptoms or any other underlying condition. This will help them give you the right support and make any adjustments to your treatment or care.

I have been contacted by the NHS contact tracing system – should I request a test?

You have been contacted by an NHS contact tracing system because you have been exposed to COVID-19 due to recent contact with someone who has now tested positive for COVID-19.

As a result, you will be advised to self-isolate for 14 days since your last contact with the person infected with COVID-19.

If you start to feel unwell and have symptoms of COVID-19 you should request a COVID-19 test.

For more information about testing see the UK Government webpage Coronavirus (COVID-19): getting tested.

Carers, Friends and Family

Someone I live with has a very high risk of serious illness due to COVID-19, what should I do?

You are advised to take extra precautions, over and above good hygiene, to protect the person you live with from COVID-19.

You should where possible:

  • Regularly wash your hands, especially when you arrive home
  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • Avoid touching your face
  • Clean frequently touched surfaces
  • Use separate towels
  • Use a separate bathroom or clean the bathroom after every use
  • Ensure all kitchenware is cleaned thoroughly

I provide support with daily household tasks to someone who has been told to shield themselves, can I still visit them?

If you are supporting or caring for someone in the very high-risk category you can take some simple steps to protect them.

This includes:

  • Practising good hygiene
  • Wash your hands regularly using soap and water for at least 20 seconds or use hand sanitiser, especially on arrival
  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • Put used tissues in the bin immediately and wash your hands afterwards
  • Minimising direct contact
  • Only provide care that is essential
  • Wear a face covering
  • Leave shopping or deliveries at the doorstep
  • Not visiting if you are unwell

It is vital that if you begin to show symptoms of COVID-19 (fever and/or new continuous cough) you do not go and visit.

I need to go out to work. How can I protect my family member?

There are some simple steps you can take to protect the person you live with.

Whilst working:

  • Practice good hygiene throughout the day, frequently and thoroughly washing your hands
  • Minimise your contact with others, keeping 2m from them if you can

Whilst at home:

  • Regularly wash your hands, especially on arrival home
  • Avoid touching your face
  • Clean frequently touched surfaces
  • Use separate towels
  • Use a separate bathroom or clean the bathroom after every use
  • Ensure all kitchenware is cleaned thoroughly

We would also recommend that you speak to your employer and let them know you are a carer for a very high-risk person. They may be able to help you minimise contact with others throughout the day by changing when you work or the tasks you need to do.