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Astra Zeneca vaccine & low platelets/blood clot risk: Should MDS patients be concerned?

Following news on the extremely rare risk of blood clots/thrombosis in patients who had the Astra Zeneca vaccine, we are posting several statements by the MHRA, JCVI and BSH on this topic.

We have also asked a number of MDS experts, whether MDS patients should be concerned.

MDS experts' opinion

The consensus from the MDS experts is that the mechanism of action leading to low platelets in MDS is different, so the type of low platelet count associated with the vaccine is not the same, and would suggest currently there is no change in the guidance for MDS patients.

In addition, the blood clot issues are largely confined to younger women.

So - as you will read in the MHRA statement, if you are a younger woman with MDS, or have a history of blood clots, or are on blood thinners already, do seek additional advice from your haematologist before having the 2nd vaccine.

Everyone else is advised to go ahead and have the 2nd dose of the vaccine, as the benefits far outweigh the extremely small risk of these blood clots, especially as the 2nd dose has been shown to improve efficacy in blood cancer patients.

The MHRA are now issuing updated guidance for healthcare professionals on how to minimise risks, as well as further advice on symptoms for vaccine recipients to look out for 4 or more days after vaccination.

Report from the MHRA - blood clots and Astra Zeneca vaccine

‘By 31 March, 20.2 million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK, meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.

The data suggest there is a slightly higher incidence reported in the younger adult age groups and we are advising that this evolving evidence should be taken into account when considering the use of the vaccine.’

The benefits of vaccination continue to outweigh any risks but the MHRA advises careful consideration be given to people who are at higher risk of specific types of blood clots because of their medical condition.

As a precaution, administration of COVID-19 Vaccine AstraZeneca in people of any age who are at higher risk of blood clots because of their medical condition should be considered only if benefits from the protection from COVID-19 infection outweighs potential risks.

Anyone who experienced cerebral or other major blood clots occurring with low levels of platelets after their first vaccine dose of COVID-19 Vaccine AstraZeneca should not have their second dose.

Anyone who did not have these side effects should come forward for their second dose when invited.

While the MHRA continues to investigate these cases, as a precautionary measure anyone that develops symptoms after vaccination is advised to seek prompt medical advice, such as:

  • shortness of breath, chest or persistent abdominal pain, leg swelling
  • blurred vision, confusion or seizures
  • unexplained pin-prick rash or bruising beyond the injection site

Furthermore anybody with new onset of severe or persistent headache that does not respond to simple painkillers starting four days or more after vaccination should speak to their doctor.'

Read more via the link below:

https://www.gov.uk/government/news/mhra-issues-new-advice-concluding-a-possible-link-between-covid-19-vaccine-astrazeneca-and-extremely-rare-unlikely-to-occur-blood-clots

JCVI - Astra Zeneca and blood clot/thrombosis

JCVI statement on use of the AstraZeneca COVID-19 vaccine: 7 April 2021:

'To date, there are no reports of the extremely rare thrombosis/thrombocytopenia events following receipt of the second dose of the AstraZeneca COVID-19 vaccine.

All those who have received a first dose of the AstraZeneca COVID-19 vaccine should continue to be offered a second dose of AstraZeneca COVID-19 vaccine, irrespective of age.

The second dose will be important for longer lasting protection against COVID-19.'

Read more via the link below:

https://www.gov.uk/government/publications/use-of-the-astrazeneca-covid-19-vaccine-jcvi-statement/jcvi-statement-on-use-of-the-astrazeneca-covid-19-vaccine-7-april-2021

British Society of Haematology expert guidance to clinicians

The BSH – British Society of Haematology is also providing expert guidance to clinicians, and an opportunity to advise them further in MDT’s (multi-disciplinary meetings), if necessary.

Read more via the link below:

https://b-s-h.org.uk/about-us/news/guidance-produced-by-the-expert-haematology-panel-ehp-focussed-on-vaccine-induced-thrombosis-and-thrombocytopenia-vitt/

All 3 organisations will issue further updates and advice, as new data comes through. We will be sharing news on our website and on the weekly e-Newsletter, as always.


SOAP Study – Vaccine efficacy study – enrolling MDS patients now

King's College Hospital has secured further funding to monitor more MDS patients, as part of the SOAP study.

This study is going to measure how effective the vaccines are in blood cancer patients and specifically MDS patients, as initial results have shown that the vaccines may not be as effective as in the general population.

The results of this study may then determine next steps for MDS patients, whether a vaccine booster may be needed, or some other way to offer protection from COVID-19.

It is a very important piece of research.

The MDS haematology team is now looking for up to 50 MDS patients to come forward for recruitment, and be followed-up for up to 1 year.

Timing for enrolment is critical – as the first test needs to take place 2 weeks after your second vaccine.

For this study, the tests (swabs) will take place 3 times over the course of 1 year:

> 2 weeks after your 2nd Covid-19 vaccine
> 6 months later
> 1 year later

The study is open to any MDS patients able to travel to King's College Hospital – with the EXCEPTION OF POST-TRANSPLANT PATIENTS.

You DO NOT have to be treated at King's to take part.

MDS UK is helping King's to spread the word, and recruit potential participants.

If interested, please email membership@mdspatientsupport.org.uk, quoting Reference 'SOAP study-MDS' in the subject header.

Please provide the following information:

  • Name:
  • Address:
  • Telephone:
  • Email address:
  • Date of your 2nd Covid-19 vaccine:
  • Type of vaccine received (AstraZeneca or Pfizer):

Please also include following statements, as relevant:

  • 'I am interested to potentially enrol in the SOAP study for MDS.
  • ‘I consent to MDS UK passing on my contact details to the KCH trials team for that purpose.'

Feel free to add any other details that may be relevant.

The King's team will then get in touch to share all further details (via nurses Florence or Johanna).

Due to tight timelines, this SOAP study could not be extended further afield than King's - but it is an excellent number and results will be relevant to the entire country, and even internationally.

So please don't hesitate to express interest already.

King’s really relies on our MDS UK members to come forward for this.

Thank you.


Good News for Cancer Patients: ‘Covid-Friendly’ Cancer Care At Home Extended

Thousands of people with cancer can benefit from ‘Covid friendly’ treatments from home

Thousands of people with cancer can benefit from ‘Covid friendly’ treatments from home, the NHS announced today.

More than 30 different drugs are available to treat patients, offering benefits such as fewer hospital visits or a reduced impact on their immune system.

If you have a worrying symptom, please do come forward and get checked

Around 8,000 people have already benefitted from the treatment ‘swaps’ since April helping to maintain cancer treatment in the face of coronavirus with more than 250,000 people starting treatment for cancer since the start of the pandemic.

The NHS is funding effective and less risky treatment ‘swaps’ for patients during the pandemic, and patient access to these drugs will now be extended until the summer, with the potential to extend until the end of March next year.

Targeted hormone therapies such as enzalutamide for prostate cancer and broadened use of lenalidomide in the treatment of myeloma – bone marrow cancer – are among the options available for clinicians to choose from.

For ovarian cancer, some patients can receive trametinib as a tablet alternative to chemotherapy and so reduce the impact on their immune systems.

A string of NHS innovations to help patients to access treatment safely throughput the pandemic

The NHS Long Term Plan committed to using cutting edge treatment and technology to save and improve patients’ lives

The Covid-friendly cancer treatments are among a string of NHS innovations that have helped patients to access treatment safely throughput the pandemic.

The NHS also made up to 10,000 chemo deliveries to patients’ doorsteps during the first wave of the virus, introduced Covid-secure surgery hubs and fast tracked stereotactic ablative radiotherapy (SABR) which requires five doses rather than up to 30 with standard radiotherapy, cutting the number of hospital visits that potentially vulnerable cancer patients need to make.

NHS England has also introduced new ways of testing patients for cancer including by piloting mini cameras that patients can swallow to test for bowel cancer.

Professor Peter Johnson, NHS clinical director for cancer

“Cancer has been a priority throughout the pandemic which is why NHS staff have fast-tracked patient access to more convenient and kinder treatments to provide as many people as possible with safe and effective care, even as the NHS cared for more than 380 000 people seriously ill with Covid.

“Extending the use of ‘Covid friendly’ treatments for cancer is another example of how we are embracing the full range of treatment options and bringing the NHS to patients at home in many cases.

“If you have a worrying symptom, please do come forward and get checked – the NHS is ready and here to treat you. Cancer is easier to treat when it’s caught at an earlier stage and coming forward for a check could save your life.”

Recent analysis showed that when NHS England introduced the new cancer therapies, it boosted the number of people having cancer treatments during the pandemic, when treatment might otherwise have been delayed or not safe to give at all.

Treatment options also include:

  • Venetoclax in acute myeloid leukaemia as an oral alternative to more toxic standard chemotherapy
  • Nivolumab or pembrolizumab for patients with bowel cancer whose cancers have a specific genetic fingerprint
  • Ixazomib in myeloma as an oral alternative to treatment which would require more hospital visits and injections
  • Atezolizumab as first-line immunotherapy for bladder cancer instead of chemotherapy.

The NHS put in place a £160m initiative last year so that people with cancer could benefit from alternative, more covid friendly treatments.


How are Electronic Patient Notes Accessed in Clinical Trials?

The Medicines and Healthcare products Regulatory Agency (MHRA), the agency responsible for ensuring that medicines work and are safe, is organising a online meeting on Wednesday 31 March from 10:00 – 11:30am to ask patients and patients representatives about a new guidance for accessing electronic patient notes in clinical trials.

Have your say on a guidance on electronic patient notes

They have said to us:

This is a follow up meeting from the one that took place on 5th February to discuss initial views on this topic. Following on from the comments we had at this meeting and subsequent discussion with other stakeholders (including the NHS clinical research community, the Health Research Authority, pharmaceutical companies and those who sell medical records software) the first draft of the guidance has now been developed.

This guidance will also cover topics such as consent, confidentiality, and security and we will be asking for your views at the next meeting. 

We would like to gather a wide range of views from patient representatives and patients on this first draft of guidance. We welcome your attendance even if you were unable to attend the first meeting as there will be a summary of the points previously made.

We are currently finalising some slides which we will present at the meeting. These will be provided to you prior to the meeting. We hope to then discuss your opinions on the draft guidance and whether you feel there are other areas that should be considered.

If you would like to attend the meeting please email engagement@mhra.gov.uk by Friday 26th March. We will then provide you with the slides, agenda and joining instructions. 


Have you been vaccinated? If you experience any side-effects, you can log them officially

Now that most people in the Clinically Extremely Vulnerable Group have been vaccinated, it's vital that we report any side effects from the vaccines.

This is even more important for MDS patients. Immunocompromised people were not included in the clinical trials of the vaccines, so there is a possibility that some MDS patients may respond in a different way to the healthy people that took part in the trials.

Your reporting as patients or caregivers can help safeguard everybody who is given the vaccines so, if you are not feeling quite right following your vaccine,  please report it, even if you are not sure whether it is a side-effect of the vaccine.

Reporting side effects can be done easily through the Yellow Card Scheme which is managed by the MHRA (Medicines & Healthcare products Regulatory Agency). Please do this - even if you think your doctor may have reported on your behalf.

The MHRA advise “If in doubt, report!” You can report using any of these methods:

  • Logging on to the Yellow Card Scheme website Official MHRA side effect and adverse incident reporting site for coronavirus treatments and vaccines https://coronavirus-yellowcard.mhra.gov.uk
  • Telephoning the MHRA on Freephone 0800 731 6789 (9am to 5pm Monday to Friday).
  • Writing to the MHRA at 10 South Colonnade, Canary Wharf, London E14 4PU
  • Downloading the Yellow Card App on your smart phone from Yellow Card - NHS https://www.nhs.uk/apps-library/yellow-card/

The recommendations have not changed:

  1. Have the vaccine (whichever is offered to you) if recommended by your GP or MDS team to have it.
  2. Keep shielding and isolating – even if you have had both your vaccine jabs.

Stay safe, stay in touch with us and hope to see many of you on our video calls.

A summary of Yellow Card reporting is made public, and appears every week on their website, under Latest News: https://coronavirus-yellowcard.mhra.gov.uk/news


Call for review of COVID vaccine timings for blood cancer patients

Following the publication of emerging evidence that the Pfizer COVID vaccines are less effective for cancer patients after a single dose, the Blood Cancer Alliance (BCA) has today written to the Joint Committee on Vaccination and Immunisation (JCVI) asking them to review the case for a reduction in the 12-week delay between vaccination doses for blood cancer patients.

The Blood Cancer Alliance (BCA) is a group of fifteen UK charities working to tackle the issues blood cancer patients face, to improve the experience and outcomes of all those living with blood cancer.

The BCA has asked the Joint Committee on Vaccination and Immunisation to formally examine whether reducing the time between doses of the Pfizer vaccine for this patient group, to the 21 days that the vaccine manufacturer recommends, will give greater protection for this group of immunocompromised patients.

The BCA is also calling on the Government to establish investment in relevant clinical research to understand vaccine efficacy in blood cancer patients more fully, both after a single dose, and after full vaccination is complete.

The BCA is also asking that shielding guidance be extended while work is undertaken to understand how effective the vaccine is for the immunocompromised in the longer term. The clinically extremely vulnerable remain eligible for furlough for the duration of the scheme and we urge employers to continue furloughing staff who cannot work safely from home, even after the end of shielding guidance.

Zack Pemberton-Whiteley, Chair of the Blood Cancer Alliance:

We strongly urge the JCVI to consider this evidence and undertake a formal review as to whether the time between doses for these vulnerable patients should be shortened.

Zack Pemberton-Whiteley, Chair of the Blood Cancer Alliance, said:

"The emerging evidence published by Kings College and the Crick Institute today will be incredibly worrying for immunocompromised blood cancer patients, many of whom have already been shielding for 12 months now.

We strongly urge the JCVI to consider this evidence and undertake a formal review as to whether the time between doses for these vulnerable patients should be shortened.

The vaccines are safe, and we urge everyone to take up the offer of being vaccinated. However, in order to give adequate information to blood cancer patients, the Government must also invest in research to understand what level of protection the vaccines will afford the immunocompromised in the longer term in comparison to the general population.

Until we have this information, it is important that the Government extends its shielding guidance and support. We must also ensure blood cancer patients are not pressured to return to work before they can make an informed decision about the level of protection vaccination affords them.”

BCA letter to Matt Hancock, Secretary of State for Health

BCA letter to the JCVI, NHS England

What is the latest on MDS UK funded research?

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

First update on our PhD research project

MDS UK has great pleasure to provide the first update on the PhD research post we started funding in January 2020.

This post was made possible, thanks to legacies and donations received by our charity.

This update introduces the PhD student, William Walker. A team of experts at Queen’s University Belfast is providing experienced support and guidance.

In MDS patients some blood cells DNA is not repaired properly

Dr Kienan Savage, Senior Lecturer at School of Medicine, Dentistry and Biomedical Sciences at the Queen's University of Belfast, Centre for Cancer Research, explains the science behind the project:

“Some patients with myelodysplastic syndrome (MDS) can go on to develop the more aggressive acute myeloid leukaemia (AML). These diseases occur in the older population and have poor outcome mainly due to low level of tolerance of intensive chemotherapy.

In order to develop MDS, and indeed for this to progress to AML, some of a patient’s blood cells must acquire damage to their DNA that is not repaired properly, resulting in mutations that allow these cells to transform into cancer cells.

We know that in some cancers, particularly solid tumours like breast and ovarian tumours, the cancers develop due to a defect in their ability to repair damaged DNA, thus allowing them to accumulate more cancer initiating mutations.

Intriguingly this DNA repair defect often makes these cancers more susceptible to specific types of chemotherapies and newer targeted therapies, with reduced side-effects."

A DNA repair defect often makes a specific cancer more susceptible to certain chemotherapies

We aim to examine the ability to treat patients with DNA repair deficient MDS with drugs with more limited side effects

"By adapting a test designed to identify DNA repair deficient breast cancers, we have found that a large proportion of MDS patients, particularly those that progress to AML, have similar DNA repair deficiencies.

This project aims to use a combination of laboratory experiments, computational biology and clinical samples from patients to examine the ability to therapeutically target patients with DNA repair deficient MDS with specific drugs with more limited side effects than those currently used and therefore allow us to effectively treat more patients.

We are gaining a greater understanding into the mechanism causing MDS

William Walker said “I would first like to express my sincere gratitude to MDS UK for their donation. I would also like to show my greatest appreciation to the families whom have contributed to this funding.

We have entered a new era of MDS research thanks to advancements in genomics and many other computational technologies - this allows us to gain further understanding into the most intricate mechanisms causing MDS. Therefore, this new technology accelerates our progress and guides us in developing more effective and more specific MDS therapies.

I am incredibly excited to embark on this PhD programme, as I will be building on the current success at Queen’s University, Belfast. I feel very privileged to have joined such a strong team of world-leading MDS researchers and I believe this project will produce very promising insights into the targeting of DNA repair deficiencies in MDS. It’s a pleasure to wake up every day and know that I will be contributing to MDS research on behalf of MDS UK.”

MDS UK note: This piece of research now comes at a difficult time, due the inevitable drop in donations from Covid-19. The funds for the PhD have been ear-marked of course. However, without additional funds, our charity will struggle to keep up the full range of services to patients.
A further piece of research is also completely out of question, despite an interesting query about a complex sub-type of MDS.
We need to ensure the future of the charity first of all, before embarking into a further research project.


Coronavirus & MDS: Advice & implications for blood cancer patients – Updated on 25/02/2021

Shielding guidance: What do you need to do if you are extremely vulnerable?

Shielding guidance for those who are clinically extremely vulnerable from COVID-19 - from the Department of Health and Social Care.

See below for the latest advice to patients by the Government. Updated on 13/01/2021


This guidance is for everyone in England who has been identified as clinically extremely vulnerable. If you are in this group, you will previously have received a letter from the NHS or from your GP telling you this. You may have been advised to shield in the past.

This shielding guidance applies to clinically extremely vulnerable individuals only. Others living in a household with someone who is clinically extremely vulnerable are not advised to follow this guidance. They should instead follow the general advice and regulations set out in the national lockdown guidance that came into effect on 5 January 2021.

The clinically extremely vulnerable will get priority access to vaccination against COVID-19 before the general population and in line with the priority ordering set by the Joint Committee on Vaccination and Immunisation (JCVI). You will be contacted again by the NHS with more information on when and how you will be invited to get the vaccine.

The vaccine is likely to make an important contribution towards protecting you from COVID-19. Clinically extremely vulnerable people are expected to receive a vaccination against COVID-19 before the general population. Your local NHS will ensure that you can receive the vaccine as safely as possible, as well as any care and support needed. Even if you have had both doses of the vaccine, you should continue to follow this shielding advice, until further notice as we continue to assess the impact of vaccination among all groups. The people you live with should continue to follow the public health rules and guidance as long as they are in place, including if you have received the vaccine and also if they have received the vaccine.

LEARN MORE ABOUT THE COVID-19 VACCINE AND MDS


If you are particularly anxious – here are a few words from the counsellor at King’s College Hospital:

General guidance doesn’t replace your own assessment of your individual circumstances or risks.

Speak with your healthcare team to collaborate on a plan for what is reasonable for you.

If loved ones want you to socialise more, you may feel a sense of peer pressure, or even guilt, if you’re unable to or don’t feel ready to.

You are not alone in this. Such feelings are natural.

Try to actively adopt a compassionate view towards yourself by acknowledging that you are doing your best in a difficult situation outside of your control.

Unfortunately, being vulnerable sometimes leads to others forgetting your sense of agency & autonomy in managing your health condition. It may be helpful to reclaim this.

It’s okay to be assertive. Gently and lovingly remind others that while they should do what they think is right for them, you will do the same for yourself.

Anxiety about uncertainty is normal.

You may have thoughts about how long this will last.

Focus on the short term. Allow some flexibility in your mind that you’ll respond to future changes when they arise.

Surabhi Chaturvedi, Psychotherapist in Haemato-Oncology, King’s College Hospital

  • Part 1. Advice regarding the Coronavirus outbreak in UK
  • Part 2. Implications for blood cancer patients
  • Part 3. Implications for our MDS local patient group meetings
  • Part 4. What to do if you suspect you have Coronavirus.

The information below has been taken from the NHS websites, as well as advice given by our scientific advisors, One Cancer Voice, Bloodwise and Leukaemia Care.

Part 1. Advice regarding the Coronavirus outbreak in UK

What has changed

COVID-19 case numbers are now very high and rising rapidly across the country, driven by the new variant of COVID-19.

Everyone in England, including those who are clinically extremely vulnerable, is required to follow the new national lockdown guidance, which has been set out by the government and applies to the whole population. These restrictions:

  1. Require people to stay at home, except for specific purposes
  2. Prevent people gathering with those they do not live with, except for specific purposes.
  3. Close certain businesses and venues.
  4. Support children and young people to learn remotely until March 8th, except for vulnerable children and the children of critical workers who may still attend school.

The new information below includes additional guidance for clinically extremely vulnerable people, to help protect you from COVID-19. We will also write to you with a version of this guidance.

These new formal shielding measures will apply across the whole of England until at least 31 March.

Socialising

The new national lockdown guidance, which applies to everyone, means that you must not leave or be outside of your home and garden, except for limited purposes which are set out in that guidance.

We are advising clinically extremely vulnerable people to stay at home as much as possible.

You can still go outside for exercise or to attend health appointments, but try to keep all contact with others outside of your household to a minimum, and avoid busy areas.

You can still meet with your support bubble, but you cannot meet others you do not live with unless they are part of your support bubble. Outdoors, you can meet one person from another household for exercise. This is part of the wider national regulations that apply to everyone.

Try to stay 2 metres away from other people within your household , especially if they display symptoms of the virus or have been advised to self-isolate.

Work

You are strongly advised to work from home because the risk of exposure to the virus in your area may currently be higher. If you cannot work from home, then you should not attend work.

You may want to speak to your employer about taking on an alternative role or change your working patterns temporarily to enable you to work from home where possible.

If you need support to work at home you can apply for Access to Work. Access to Work will provide support for the disability-related extra costs of working that are beyond standard reasonable adjustments an employer must provide.

If you cannot make alternative arrangements, your employer may be able to furlough you under the Coronavirus Job Retention Scheme, which has been extended until the end of April 2021. You should have a conversation with your employer about whether this is possible.

As you are being advised not to attend work, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA). The formal shielding letter you receive will act as evidence for your employer and the Department of Work and Pensions that you are advised to shield and may be eligible for SSP or ESA. Members of the household who are not clinically extremely vulnerable should continue to attend work if they are unable to work from home, in line with the wider rules set out in the national lockdown guidance.

Education settings

As our knowledge of COVID-19 has grown, we now know that very few children and young people are at highest risk of severe illness due to the virus. Doctors have therefore been reviewing all children and young people who were initially identified as clinically extremely vulnerable to confirm whether they are still thought to be at highest risk.

If you have already discussed this with your child’s doctors and they have confirmed your child is still considered clinically extremely vulnerable, your child should follow this shielding advice.

Under the current national lockdown, children will learn remotely until February half term, except for vulnerable children and the children of critical workers who may still attend school.

Clinically extremely vulnerable children and young people should not attend school or other educational settings, because the risk of exposure to the virus in the community is now very high. Your school or college will make appropriate arrangements for you to be able to continue your education at home.

Travel

You are advised to stay at home as much as possible and not to travel unless essential (for example, to attend health appointments).

Shopping

You are advised not to go to the shops. Use online shopping if you can, or ask others to collect and deliver shopping for you (friends and family, local volunteers or NHS Volunteer Responders).

You can register to request priority access to supermarket delivery slots, if you do not have someone you can rely on to go shopping for you. If you already have priority access to a supermarket delivery slot, that will continue – you do not need to do anything further. When registering you will be asked for your NHS number. You can find it on any letter the NHS has sent you, or on a prescription.

Registering on the site just gives you priority. It does not mean you’ll definitely get a delivery slot. If you want access to supermarket deliveries, you will also need to set up an account with at least one supermarket and book slots yourself.

If you need other forms of help, including support to register for priority access to supermarket delivery slots, you should contact your local council directly. Find out how your local council can help.

Medicines

You are strongly advised not to go to a pharmacy.

In the first instance, you should ask if any friends, family or volunteers can collect medicines for you.

If friends and family are not able to collect your medicines for you, and you and/or the pharmacy are unable to arrange for a volunteer, then you will be eligible for free medicines delivery. Please contact your pharmacy to inform them that you are clinically extremely vulnerable and need your medicines delivered, and they will arrange this free of charge.

Accessing care and support

You can still receive informal care at home from people within your support bubble.

You can still receive care at home from professional social care and medical professionals.

We urge you to continue using the NHS and other health providers for your existing health conditions and any new health concerns.

You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit Health at home or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.

If you do need to receive care in person, you can. Your local NHS services are well prepared and will put in measures to keep you safe.

It is also really important to look after your mental health. Go to the Every Mind Matters website for advice and practical steps that you can take to support your wellbeing and manage your mental health during this pandemic. If you or someone you care for are experiencing a mental health crisis, we urge you to make contact with a local health professional immediately.

Any carers or visitors who support you with your everyday needs can continue to visit. This also applies for those of a child or young person in your care. They should follow social distancing guidance where close or personal contact is not required.

You should continue to access support from local charities and organisations, as well as NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call, and transport to and from health appointments. Call 0808 196 3646 between 8am and 8pm to arrange support or visit NHS Volunteer Responders website.

Registering for additional support

If you need additional help to follow this guidance, your local council may be able to help. If you are advised to shield you will be able to register yourself or someone else to:

  • request priority access to a supermarket delivery slot (if you have already got priority access that will continue – you do not need to do anything further)
  • tell your council if you need support to follow shielding guidance, especially if you are unable to arrange this yourself or with the help of friends, family or other support networks
  • make sure your details, such as your address, are up to date

When registering you will be asked for your NHS number. You can find it on any letter the NHS has sent you, or on a prescription. It is helpful if you register even if you do not have any support needs at this time. You can log in and update your needs if circumstances change at any time.

Coronavirus Structure

Coronavirus Structure

Part 2. Implications for blood cancer patients

Learn more on the NHS Website: Who's at higher risk from coronavirus? 

If I have blood cancer, am I more at risk?

For many people, their body will be able to fight off coronavirus like other viruses and colds. However, coronavirus can have more serious effects on anyone who has a long-term health condition or a weakened immune system, including some people with cancer. This includes:

  • People having chemotherapy, or who’ve had chemotherapy in the last 3 months.
  • People having immunotherapy or other antibody treatments for cancer.
  • People having targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors.
  • People who’ve had a bone marrow or stem cell transplant in the last 6 months, or who are still taking immunosuppression drugs.
  • People with some types of blood cancer which affect the immune system, such as MDS, chronic leukaemia, lymphoma or myeloma, even if no treatment is being given.

Would like a specialist MDS consultation? You can talk online, from the comfort of your home, with Prof. Bowen

Part 3. Implications for our MDS UK local patient group meetings

It doesn't seem likely that we shall be able to resume face-to-face meetings for a while yet.

We still want to maintain our services to you, and provide you with all the regular news about MDS, as well as giving you an opportunity to connect to one another virtually. We know how important patient to patient contact is for everyone.

We've held many online/virtual Zoom meetings. Feedback has been very positive, and patients who had not been able to attend face-to-face meetings for various reasons were able to participate. Hence, we are now offering online meetings open to all members and carers.

Whatever happens during and after the COVID-19 pandemic, we aim to maintain some virtual meetings, as it has attracted new members, who had not attending face to face meetings previously.

We are also providing nationwide meetings with particular topics which you may find of interest. Please let us know if you have any topic in mind.

Many patients have already embraced the video meeting call technology Zoom (or something similar) in order to stay in touch with family members during the lockdown. If you haven't, please contact us.

If you are a first time user of video call – please don’t worry. The first 15 minutes of each meeting will be set aside to sort out any technical issues. 

Part 4: What to do if you suspect you have Coronavirus

There might not be tests available at any given time.

The NHS is experiencing very high demand for testing at the moment.

More tests, both for drive-through sites and home delivery, might be made available later. Please visit this page often.

If your condition gets worse, or you do not get better after 7 days, use the NHS 111 online coronavirus service. Only call 111 if you cannot get help online. For a medical emergency, dial 999.

Symptoms of coronavirus

The symptoms of coronavirus are:

  • a cough
  • a high temperature
  • shortness of breath

These are also symptoms of other common conditions such as a regular cold, virus or flu. Having these symptoms does not necessarily mean you have coronavirus.

If you feel unwell

If you are getting a test because you have symptoms, you and anyone you live with must stay at home (self-isolate) until you get your result.

Anyone in your support bubble must also self-isolate until you get your result.

If you’ve been in contact with someone with coronavirus, or been to a high risk area in the last 14 days, call 111 or use 111 online (see the NHS list of high risk areas).

Getting help in Scotland, Wales or Northern Ireland

  • Scotland: call your GP surgery or call 111 if your surgery is not open
  • Wales: call 111
  • Northern Ireland: call 111

Check if you need medical help

NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do. Use this service if:

  • you think you might have coronavirus
  • in the last 14 days you've been to a country or area with a high risk of coronavirus
  • you've been in close contact with someone with coronavirus

Use the 111 coronavirus service

Learn more about the situation right now: GOV.UK: information on coronavirus and the situation in the UK

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Immune response to COVID-19 reduced in patients with blood cancers

Research FOR Patients
-For an informed and empowered opinion-
Have you made your clinical paper accessible yet?

Patients with blood cancers such as leukaemia vary in their immune response to COVID-19 and can struggle to clear infection for very many weeks, according to new research published in Cancer Cell. By contrast, most patients with solid tumours, even those with advanced cancer, can mount an effective and lasting immune defence.

Researchers from King’s College London and the Francis Crick Institute have been studying the way SARS-CoV-2 impacts the immune system through the COVID-IP project and have already identified immune signatures that are associated with severe disease and hospitalisation. Their latest collaboration, funded by Cancer Research UK, called SOAP, specifically looks at people with cancer to see if their immune system responds differently to the coronavirus and if there are any long-term effects.

Building a picture of cancer-specific infection and immunity could help inform treatment strategies

Until now, doctors have had very little information about how COVID-19 might impact patients with cancer and many have faced delays with treatment. So it’s vital to build a picture of cancer-specific infection and immunity that could help inform treatment strategies. This is all the more relevant given the UK government’s renewed advice on shielding.

The team led by Dr Sheeba Irshad, in collaboration with Professor Adrian HaydayDr Piers Patten, and staff at Guy’s and St Thomas’ and King’s College Hospitals, analysed the blood of 76 cancer patients - 41 who had COVID-19 and 35 who had not been exposed to the virus. 23 of the people with cancer had solid tumours, and 18 had blood cancers.

When they compared samples with the immune signatures from COVID-19 patients without cancer, they saw that patients with solid tumours had a similar immune response to those without cancer, regardless of cancer stage or if they were undergoing treatment. These patients were still able to mount an effective and lasting antibody response.

However, the immune response of patients with blood cancers varied considerably, particularly for patients with cancers that affect B-cells, which are crucial for mounting an antibody defence. In most, the response to infection was less pronounced and took longer to develop.

Some patients struggled to clear the infection and others developed no antibodies at all, meaning that certain patients with blood cancer had an active coronavirus infection for more than 10 weeks.

Lymphocyte B cell

Sheeba Irshad, SOAP project lead at King’s College London, said:

“Whilst we need to maintain caution, our study provides some confidence and reassurance to care providers that many of our patients with solid cancers will mount a good immune response against the virus, develop antibodies that last and hopefully resume their cancer treatment as soon as possible. These conclusions imply that many patients despite being on immunosuppressive therapies will respond satisfactorily to COVID-19 vaccines.

For patients with blood cancers, especially those with B-cell malignancies, this may not hold true even in the era of COVID-19 vaccines. Our work suggests that they may be susceptible to persistent infection despite developing antibodies, so the next [and ongoing] stage of our study will focus on monitoring their response to the vaccines. At present the best way to protect them may be to vaccinate all the carers to achieve herd immunity in the clinic.”

COVID-IP project lead Adrian Hayday, who heads the Crick’s Immunosurveillance Laboratory and is Professor of Immunobiology at King’s College London, said: “This study is a prime example of a fast-tracked collaboration between basic scientists and clinical teams that in a short space of time revealed several unexpected findings that are highly informative and very helpful clinically.

“The COVID-IP study was made possible because of technologies originally used to track the immune response in patients receiving cancer immunotherapies and we’ve been able to adapt this work to further understand the impact of SARS-CoV-2.”

The next phase of the SOAP study will be monitoring the immune responses of cancer patients to the COVID-19 vaccine.

Learn more about this clinical trial


COVID-19 vaccines and MDS: Approvals and Advice from UK MDS Forum of experts

COVID-19 Vaccines and MDS - Updated 03/02/21

Advice on the Covid-19 vaccines for MDS Patients:

Both Pfizer/BioNTech vaccine and Oxford University/AstraZeneca vaccines have been deemed safe for MDS patients. There are no known risks to cancer patients, or those on cancer treatment.

Patients with an immune compromised system will still need to shield even after receiving the vaccine, as the protection may not be as effective as in healthy individuals.

Gap between doses of the vaccine

There has been some discussion on the decision to extend the gap between the 1st and the 2nd dose of the vaccines. The consensus is that a 12 week gap (instead of the 3 week in the clinical trials) will generally not be detrimental.

However, the current thought is that patients with an immune compromised system, who are less likely to fully respond to the vaccine, should have the 2nd dose sooner rather than later. This will still need to be confirmed.

Allergies

Anyone with a previous history of allergic reactions to the ingredients of the vaccine should not receive it, but those with any other allergies such as a food allergy can now have the vaccine.

Read the full article: https://www.gov.uk/drug-safety-update/covid-19-vaccines-pfizer-slash-biontech-and-covid-19-vaccine-astrazeneca-current-advice

More information on COVID-19 vaccines and recommendations for MDS Patients

  • COVID-19 vaccine advice for patients with haematological disorders by the British Society for Haematology: Updated 13th Jan 2021
  • Oxford University/AstraZeneca Covid-19 vaccine approved by the UK regulator
  • Pfizer/BionTech Covid-19 vaccine approved by the UK regulator
  • Moderna Covid-19 vaccine approved by the UK regulator
  • Advice from UK MDS Forum of experts - 16th December 2020

COVID-19 vaccine advice for patients with haematological disorders by the British Society for Haematology

This statement has been produced by the British Society for Haematology and has been reviewed by the Intercollegiate Committee on Haematology, on behalf of the Royal College of Physicians of London and the Royal College of Pathologists. Specialist haematology groups have also contributed. V2 13th Jan 2021

"The vaccines approved for use in the UK have been developed by Pfizer/BioNTech and Oxford/AstraZeneca. These have been authorised for use by the Medicines and Healthcare products Regulatory Authority (MHRA) and were introduced into use in the UK on 8 December 2020/4 January 2021.

These are non-replicating vaccines so do not pose a risk of infection and are safe for patients with blood cancer and other haematological conditions. It is likely that other vaccines will be authorised and be available over the coming weeks.

Patients with haematological conditions will be invited for the vaccination over the next weeks and months and many will fall within the priority groups for vaccination.

Patients who are receiving chemotherapy or immunosuppression should discuss with their hospital clinicians how they can safely receive the vaccine and optimal timing of administration. There is no current evidence that the vaccine might be a risk to the immunosuppressed patient.

Many patients with haematological conditions are on therapy that will induce immunosuppression or will be immunocompromised as a consequence of their underlying disease and they may have a reduced response to the vaccine.

Patients should therefore not presume they are immune after receiving the vaccine (and booster) and should still follow government advice on use of face masks, social distancing and hand hygiene to reduce their exposure to the virus"

Click here for more information: https://b-s-h.org.uk/media/19236/haematology-covid-19-v11-vaccination-statement-13121-clean.pdf
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Oxford University/AstraZeneca Covid-19 vaccine: UK Medicines & Healthcare products Regulatory Agency (MHRA) Approval

The COVID-19 vaccine developed by Oxford University/AstraZeneca has today (30 December 2020) been given regulatory approval by the Medicines and Healthcare products Regulatory Agency (MHRA) after meeting required safety, quality and effectiveness standards.

Following a rigorous, detailed scientific review by the MHRA’s expert scientists and clinicians and on the basis of the advice of its scientific, independent advisory body, the Commission on Human Medicines, the UK regulator has approved COVID-19 Vaccine AstraZeneca for use across the UK.

MHRA Chief Executive Dr June Raine said:

"We are delighted to announce the good news that the Oxford University/AstraZeneca vaccine for COVID-19 is now approved for supply following a robust and thorough assessment of all the available data."

"A huge collaborative effort and commitment goes into these assessments which include reviewing vast amounts of data. Our staff have worked tirelessly to ensure we continue to make safe vaccines available to people across the UK."

"No stone is left unturned when it comes to our assessments. This approval means more people can be protected against this virus and will help save lives. This is another significant milestone in the fight against this virus. We will continue to support and work across the healthcare system to ensure that COVID-19 vaccines are rolled out safely across the UK. Protecting health and improving lives is our mission and what we strive for."

The Oxford University/AstraZeneca vaccine has been approved for use for people 18 years or older and consists of two doses, with the second dose administered 4-12 weeks after the first dose. The transportation and storage requirements for this vaccine mean that it needs to be kept at temperatures of 2C to 8C, which is similar to a conventional fridge for up to six months and can be administered within existing healthcare settings.

Read the full article: https://www.gov.uk/government/news/oxford-universityastrazeneca-covid-19-vaccine-approved

Pfizer/BionTech Covid-19 vaccine approved by MHRA

MHRA approval of the Pfizer/BionTech Covid-19 vaccine

The first COVID-19 vaccine for the UK, developed by Pfizer/BioNTech, has today been given approval for use following a thorough review carried out by the Medicines and Healthcare products Regulatory Agency (MHRA).

The decision by the UK regulatory authority was made with advice from the Commission on Human Medicines (CHM), the government’s independent expert scientific advisory body. A dedicated team of MHRA scientists and clinicians carried out a rigorous, scientific and detailed review of all the available data, starting in October 2020.

The MHRA expert scientists and clinicians reviewed data from the laboratory pre-clinical studies, clinical trials, manufacturing and quality controls, product sampling and testing of the final vaccine and also considered the conditions for its safe supply and distribution
MHRA Chief Executive, Dr June Raine said:

We have carried out a rigorous scientific assessment of all the available evidence of quality, safety and effectiveness. The public’s safety has always been at the forefront of our minds – safety is our watchword.

I’m really pleased to say that the UK is now one step closer to providing a safe and effective vaccine to help in the fight against COVID-19 – a virus that has affected each and every one of us in some way - and in helping to save lives.

Read the full article: https://www.gov.uk/government/news/uk-medicines-regulator-gives-approval-for-first-uk-covid-19-vaccine

Moderna Covid-19 vaccine approved by MHRA

MHRA approval of the Moderna Covid-19 vaccine

The COVID-19 vaccine developed by Moderna has been given regulatory approval for supply by the Medicines and Healthcare products Regulatory Agency (MHRA). This follows a thorough and rigorous assessment by the MHRA’s teams of scientists, including advice from the independent Commission on Human Medicines, which reviewed in depth all the data to ensure this vaccine meets the required standards of safety, quality and effectiveness.

This is the third COVID-19 vaccine to be approved for use by the MHRA and is the second mRNA vaccine (the Pfizer/BioNTech vaccine approved in December 2020 is also an mRNA vaccine).

MHRA Chief Executive Dr June Raine said:

Today’s approval brings more encouraging news to the public and the healthcare sector. Having a third COVID-19 vaccine approved for supply following a robust and thorough assessment of all the available data is an important goal to have achieved and I am proud that the agency has helped to make this a reality.

The progress we are now making for vaccines on the regulatory front, whilst not cutting any corners, is helping in our global fight against this disease and ultimately helping to save lives. I want to echo that our goal is always to put the protection of the public first.

Read the full article: https://www.gov.uk/government/news/moderna-vaccine-becomes-third-covid-19-vaccine-approved-by-uk-regulator

Advice from UK MDS Forum of experts

MDS patients are asking about the safety and advisability of the vaccines, on the background of being amongst the highest risk groups for COVID-19.

In the current absence of precise information on the safety and efficacy of the current Covid-19 vaccines in patients with blood cancers, we asked the UK MDS Forum (MDS expert group in the UK), for their initial opinion, and they produced the following guidance.

http://www.ukmdsforum.org.uk/

UK MDS Forum guidance:

There is currently only one licensed and available vaccine for Covid-19 – the Pfizer/BioNtech vaccine.

This is a not a ‘live’ vaccine and therefore should be safe for blood cancer patients, including MDS patients. The Joint Committee of Vaccination and Immunisation (JCVI) have set out a prioritisation for persons at risk, including those who are defined as clinically extremely vulnerable (CEV). This can be found on the government website (NHS UK Coronavirus JCVI ).

Download and print this advice.

Download PDF

The consensus is that generally, for blood cancer patients, the benefits of the vaccine far outweigh any potential side effects of the vaccine and the risks associated with having COVID-19 infection. Therefore, vaccination is recommended, except in people with a history of severe allergic reactions.

As time goes by, other vaccines will become available, and they will be assessed on their own merit, depending on precise details of the trial population (e.g. – was it tested on immuno-compromised or blood cancer patients?)

For now, we are only looking at the Pfizer/BioNtech vaccine. 

Which MDS patients should get the Pfizer/BioNtech vaccine?

The MAJORITY of MDS patient should be receiving the Pfizer/BioNtech vaccine.

This will include:

  • All MDS subtypes regardless of age
  • All IPSS & IPSS-R risk groups
  • MDS patients on watch & wait or treatment, now or in the past
  • MDS Patients on clinical trials  

Which MDS patients should exercise caution regarding the vaccine, and speak to their haematologist before receiving the vaccine?

  • patients with a known severe allergy
  • patients who carry an EPI-PEN
  • Patients who have a low platelet count who may bleed or bruise at the injection site. To reduce this risk, we recommend the platelet count should be 30 x 109/l or above and that prolonged pressure at the injection site should be applied for 5 minutes. Those receiving regular platelet transfusions should have their vaccine after a platelet transfusion. If the platelet count is less than 30 x 109/l and the patient is not receiving regular platelet transfusions, they should discuss with their haematologist.

Post-transplant haematology patients should speak to their haematologist and/or transplant team, who will follow the up-to-date advice from British Society of Bone Marrow Transplantation (BSBMT).

What remains to be decided?

Whether it will be the hospital or GP who will administer the Pfizer/BioNtech vaccine to blood cancer patients.

Whether the vaccine will offer a sufficient level of protection against COVID-19 in immune-compromised and blood cancer patients.

What will patients need to do post vaccination?

As the effectiveness of the Pfizer/BioNtech vaccine may not be guaranteed in immune-compromised patients, it will be necessary for all vaccinated patients to maintain social distancing and follow the currently recommended government precautions against COVID-19. These precautions are updated regularly on www.gov.uk/coronavirus.

These precautions will need to be maintained until the COVID-19 pandemic is over, or until it can be proven that the Pfizer/BioNtech vaccine works well enough in immune-compromised patients.

What about the alternatives to the Pfizer/BioNtech vaccine?

Editor's Note: Both Moderna & Oxford University/AstraZeneca vaccines were approved by the UK regulator after this recommendation was written.

The Pfizer/BioNtech vaccine is the only licensed and approved method to protect patients from COVID-19. There are 2 further COVID-19 vaccines under review, which may become available, but nothing is certain. There is also an on-going antibody clinical trial from Astra Zeneca, which in time could be available, for patients who cannot be vaccinated. It may even be used as a prophylaxis (preventatively) for patients in care homes for example. BUT - again – it is unknown if, and when any of these options may become available in the future. Hence the recommendation is to have the Pfizer/BioNtech vaccination, when it will be offered.

Efficacy of the Pfizer/BioNtech vaccine and longer-term thinking?

To check the full efficacy of the Pfizer/BioNtech vaccine, the plan is to set up a monitoring study to measure the COVID-19 antibody response in blood cancer and immuno-compromised patients.

This anti-body response will be measured through a blood test.

If the antibody response is less than required to guarantee COVID-19 protection, it is thought that patients may then still have the option of a new vaccine, or the antibody option, if these become available.

Further advice will be made available, as more data is shared with clinicians and carefully analysed, and as the government and/or regulatory agencies issue more guidance on specific sub-groups of patients.

Specific advice and guidance will be given for each new vaccine, each MDS sub-group, and age group of MDS patients.

More information on the different COVID-19 vaccines

Pfizer/BioNtech: 95% effective in a study of 43,000 people. The trial also looked at people aged 65 and over, whose immune systems are weaker than those of younger people. In this older group, 94% effectiveness was observed. This vaccine works by taking part of the genetic code of the coronavirus and putting it in a vaccine. Once injected, this code tells our cells to produce a protein found on the surface of the coronavirus. Our immune systems respond to this and ‘remember’ what coronavirus looks like. When encountered again, our body will recognise it, allowing us to respond quickly to avoid becoming ill.

Moderna: Similar technology to the Pfizer/BioNtechvaccine. This saw 95% effectiveness levels in a study of 30,000 participants. They looked specifically at 7,000 people over the age of 65, as well as people with diseases that put them at high risk of complications from the coronavirus, such as diabetes and cardiac disease.

Astra Zeneca Oxford: This vaccine is made from a modified version of a virus that causes the common cold in monkeys. Researchers have inserted a gene in this vaccine, which when injected, prompts our bodies to make a protein found on the coronavirus. This is NOT a protein that will cause infection. Our immune system should then respond to this, preventing infection in the future. This vaccine has been shown to be between 60 and 90% effective depending on how doses are administered in a clinical trial of 20,000 people.

Further Information

All vaccines undergo a review by the Medicines and Health Regulatory Agency (MHRA) (in the UK).  Other regulatory agencies, such as the European Medicines Agency (EMA) and the Food and Drug Administration (FDA) in the USA will conduct their own assessment.

The EMA ran a public meeting on the topic: “Public stakeholder meeting: development and authorisation of safe and effective COVID-19 vaccines in the EU Live broadcast - 12noon - 15:30 (GMT) ; Event summary ; Documents

More information on COVID-19 vaccines via our colleagues at Blood Cancer UK

This summary was created by the MDS UK team and approved by the UK MDS Forum experts:

Prof G. Mufti, Dr D. Culligan, Prof D. Bowen, Dr S. Killick, Dr A. Kulasekararaj

References:


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