this is archive.php

Great North Run Solo: Calling all Runners!

As you may already know, The Great North Run – one of MDS UK’s biggest annual fundraisers was sadly postponed due to the Covid19 pandemic.

Fortunately, the organisers have devised an excellent way to keep you running and raising essential funds for our life-changing work: The Great Run Solo, a virtual running challenge to keep you moving and raise funds for the NHS. There are weekly and monthly challenge options, as well as challenges for kids. Select the challenge that best fits your fitness & aims and get running. It just has to be done within the allotted 7 or 28 days.

The Great North Run Solo! Pick your challenge

The "Great North Run Solo" launched on 28 th June (the birthday of the Great North Run) and “runs” until 13 th September- the day the 40th GNR was scheduled.

To complete the challenge and claim a special edition Great North Run Solo medal, runners need to complete 40 runs (minimum) of any distance over the next 78 days.

It costs just £10 to join, and while all entry profits will go to the NHS Charities Together Covid19 Urgent Appeal, you can allocate your raised funds to MDS UK!

We need as many of our wonderful runners, new and old, to take part in this event so we can continue to support MDS patients and their loved ones through Covid and beyond.

The challenge is also an excellent opportunity to soak up some summer rays and with no distance target, you can go at your own pace!

For more information and to enter the challenge, click here.

For any fundraising related queries, contact Jan Edwards (Fundraising Officer) on fundraising@mdspatientsupport.org.uk


What is CMML? Latest Research on a Unique Syndrome

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

CMML: Not a form of Myelodysplastic Syndromes

A recent article in the American Society of Hematology (ASH) Clinical News has identified how, for too many years and despite its unique clinical and biological characteristics, CMML (Chronic Myelomonocytic Leukaemia) has been treated as a form of myelodysplastic syndrome (MDS).

The contributors highlight the woeful lack of CMML-specific treatments and research. They call for improved international disease-specific response criteria to be agreed which can be used in future trials and research involving CMML patients.

Please read the full article below.

CMML: A Unique Overlap Syndrome Receiving Increased Attention

For many years, chronic myelomonocytic leukemia (CMML) has been treated as a form of myelodysplastic syndrome (MDS), despite its unique clinical and biological characteristics.

“Everyone recognized that, clearly, there were some patients who had highly proliferative features that weren’t at all typical of MDS, but CMML was still considered to be part of MDS for decades,” Mrinal Patnaik, MBBS, a hematologist at the Mayo Clinic in Rochester, Minnesota, told ASH Clinical News.

Inclusion of CMML under the umbrella of MDS for so long – beginning with the 1976 and 1982 French-American-British MDS classifications – has hindered a deeper understanding of the disease that might have resulted from studying it as a separate entity. There also are no CMML-specific approved drugs.

In recent years, clinicians and researchers have ramped up efforts to clarify the pathogenesis, natural disease progression, and presentation of CMML. ASH Clinical News spoke with Dr. Patnaik and other specialists about these efforts, as well as the challenges of defining uniform response criteria to guide clinical trials of CMML-specific treatments.

What Is CMML?

CMML is a clonal hematopoietic stem cell disorder that frequently progresses to acute myeloid leukemia (AML). It is classified as a rare disease and is estimated to occur in four of every million people in the U.S. each year. It occurs more commonly in men and rarely in young people – 90 percent of the people diagnosed with CMML are age 60 or older.(1)

Its incidence may be slightly higher than previously estimated, according to Eric Padron, MD, from the Moffitt Cancer Center in Tampa, Florida, because it often is recognized only when a patient with MDS seeks a second opinion. The disease is an “overlap” syndrome that displays characteristics of both MDS (such as peripheral blood cytopenias) and myeloproliferative neoplasms (MPNs; such as leukocytosis and splenomegaly).

The 2001 World Health Organization (WHO) classification of leukemias and other hematopoietic neoplasms first separated CMML from MDS and created a distinct category of MDS/MPN overlap syndromes. In 2008, the WHO separated CMML via blast proportion into CMML-0 (<5% blasts), CMML-1 (5-9% blasts), and CMML-2 (10-19% blasts). Finally, in 2016, the WHO again revised its classification, including recommending that CMML be classified into two subtypes: proliferative (MPN-CMML) and dysplastic (MDS-CMML) depending on the patient’s white blood cell count.(2)

Dr. Patnaik said that the WHO’s decision to confirm that CMML should not be put into either MDS or MPN but should stand alone was a positive step forward. In addition, investigators have identified certain genetic mutations such as SRSF2, ASXL1, CBL, SETBP1, and JAK2 that are not exclusive to CMML but are more commonly found in patients with CMML than MDS without proliferative features, which can aid diagnosis.

Expected survival for patients diagnosed with CMML ranges from just a few months to a few years, depending on a variety of risk factors that are not yet well defined.

Fifteen to thirty percent of patients will progress to AML, at which point survival rates drop to 4.7 months without a hematopoietic cell transplantation (HCT) and 14.3 months with an HCT.

“The whole story with CMML is that it is a spectrum in the process of evolution to AML,” said Dr. Patnaik. “So, about 30 percent of all patients with CMML will eventually transform to AML within three to five years. When that happens, survival is very poor.”

One known prognostic factor for survival is CMML subtype. The dysplastic and proliferative subtypes affect patients very differently: Patients with the dysplastic subtype have low blood counts and their natural history and clinical problems related to marrow failure are more similar to patients with MDS; those with the proliferative subtype have high blood counts and often have constitutional symptoms or symptoms related to organomegaly. Patients with proliferative forms of the disease also have shorter survival and a higher risk of transformation to AML.

How Is CMML Treated?

There is only one curative treatment for CMML: allogenic HCT. Unfortunately, only a minority of CMML patients will qualify for the procedure.(³)

Complicating matters further, there are no studies that define when a transplant is the most appropriate option for CMML. Dr. Padron recommends that all patients with high-risk disease who are young and fit enough to be considered transplant candidates should be referred for consideration of an HCT.

Two other treatments are approved for CMML, both hypomethylating agents approved for MDS for which the FDA indication included CMML: azacitidine and decitabine. However, the pivotal trials included few patients with CMML, and response rates are low, especially in proliferative forms of the disease.

“There’s an injustice that has been done to this disease, going back almost a decade,” Dr. Patnaik said, referring to the WHO’s 2008 classification, which introduced the MDS/MPN category of diseases that displayed proliferative and dysplastic characteristics.

“Essentially all the trials that included patients with CMML used disease response criteria designed for MDS,” he explained. “There is clear evidence that [treatment with hypomethylating agents] does not alter the disease biology. In fact, in Europe, if a patient has proliferative CMML, hematologists can’t even use these drugs.”

Instead, doctors tend to treat patients with drugs that target specific symptoms of CMML, such as cytopenias, splenomegaly, and infections with transfusions, blood cell growth factors, and antibiotics. While these can improve patients’ quality of life, Eric Solary, MD, and Raphael Itzykson, MD, wrote in Blood, ”they barely modify disease evolution. … Improved understanding of CMML pathophysiology will hopefully lead to the exploration of novel targets that potentially would be curative.”(4)

How Do We Know if a Treatment Is Working?

The higher prevalence of MDS had a negative effect on CMML clinical trials. “For a long time, the community was so interested in MDS that CMML-specific trials were almost absent,” Dr. Patnaik added. For example, he said, drug studies can enrol 400 patients with MDS, and 10 with CMML.

A major impediment to conducting CMML-specific drug trials has been a lack of uniform response criteria. Without these, it is extremely difficult to prove to regulatory agencies that a drug is working, even if a doctor can tell a patient is doing better. This decreases the likelihood of trials being supported or even considered.

“One of the difficulties in trying to understand how patients with different types of CMML respond to different therapies is that we never had [disease-specific] response criteria at all,” said Michael Savona, MD, a hematologist at Vanderbilt University in Nashville, Tennessee. “When we go to different trial sponsors to try to access new drugs, the most common response we get is, ‘Well, how do you know if it’s working?’ And, to be honest, we don’t have a very good answer.”

Defining response criteria is a challenge because the natural history and prognosis of CMML are poorly understood. There are about 10 prognostic scoring systems that have been proposed for CMML, explained Dr. Padron, adding that “there are no good data telling us when the best timing is for transplant.”

To fill in the knowledge gaps, Dr. Padron and colleagues have launched a project to sequence nearly 1,000 patients with CMML both before and after treatment “to see whether we can confirm what the prognostic mutations are and try to answer that question of which prognostic scoring system we should be using.”

In 2015, Drs. Savona and Padron were part of an international working group that published a proposal of uniform response criteria for CMML, which they hope will be independently validated and refined over time.(5)

“The FDA is quite keen on quality-of-life–associated response elements, and my sense is that if we can improve some of these quality-of-life metrics, specifically how patients are feeling and their spleen size, then that will translate to improved survival,” said Dr. Savona, who was first author on the response criteria paper. The proposal included criteria for measuring improvements in blood counts and reduction in myeloblasts, similar to MDS, but also meaningful reductions in spleen size and clinical symptoms.(5)

At the end of 2018, the European Hematology Association and the European LeukemiaNet released new guidelines for CMML diagnosis and management that update and revise criteria put forth by the MDS International Working Group (IWG) in 2000 and 2006.(6)

“While response to treatment can be evaluated by IWG 2006 criteria in [dysplastic] CMML, recently proposed ad hoc MDS/MPN criteria should be preferably adopted,” the guideline panel wrote. “With respect to pivotal phase III clinical trials, we recommend robust primary endpoints such as overall survival, progression-free survival, or event-free survival, and incorporation of the MDS/MPN criteria as secondary endpoints.”

Where to Next?

While the recently proposed international response criteria have increased interest in studying and developing treatments for CMML, researchers still have a long way to go. The patient population is exceptionally heterogeneous and the disease relatively rare, making clinical validation a challenge.

Studying this rare disease might require new trial designs. Dr. Savona is the principal investigator of the ABNL-MARRO study, an initiative from the MDS/MPN IWG and Vanderbilt University Medical Center in which Drs. Patnaik, Padron, Solary, and Itzykson are also involved.(7) ABNL-MARRO, or “A Basket study of Novel therapy for untreated MDS/MPN and Relapsed/Refractory Overlap Syndromes,” will enrol patients with MDS/MPN overlap syndromes in the U.S. and several European countries.

The basket design allows new compounds and therapy combinations to be introduced easily among MDS/MPN IWG clinical sites where patients with MDS/MPN are treated. Researchers also will study the biology and pathophysiology of the diseases to identify potential markers of severity, prognosis, and response.

“We’re proud of this study because it is going to open across the U.S. and Europe with the same protocol,” said Dr. Savona. “It’s been the challenge of my career to try to operationalize something across different countries like this.” —By Emma Yasinski

References

    1. American Cancer Society. “What Are the Key Statistics About Chronic Myelomonocytic Leukemia?” Accessed April 10, 2019, from https://www.cancer.org/cancer/chronic-myelomonocytic-leukemia/about/key-statistics.html.
    2. Arber DA, Orazi A, Hasserjian R, et al. The 2016 revision to the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia. Blood. 2016;127:2391-405.
    3. Deeg HJ, Sandmaier BM. Who is fit for allogeneic transplantation? Blood. 2010;116:4762-70.
    4. Solary E, Itzykson R. How I treat chronic myelomonocytic leukemia. Blood. 2017;130:126-36.
    5. Savona MR, Malcovati L, Komrokji R, et al. An international consortium proposal of uniform response criteria for myelodysplastic/myeloproliferative neoplasms (MDS/MPN) in adults. Blood. 2015;125:1857-65.
    6. Itzykson R, Fenaux P, Bowen D, et al. Diagnosis and treatment of chronic myelomonocytic leukemias in adults. HemaSphere. 2018;2:e150.
    7. ABNL MARRO. Accessed April 10, 2019, from https://abnlmarro.org/.
Image By Simon Caulton - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=21071420

In CMML, there are increased numbers of monocytes and immature blood cells (blasts) as well as abnormal looking cells (dysplasia)


Was it easy to get the right treatment for your condition? Get your voice heard!

Take part in a survey about access to blood cancer treatments

Do you have a few minutes to help the Blood Cancer Alliance (BCA) with this patient survey about access to medicines and treatment in the UK?  The Blood Cancer Alliance would love to hear from patients, families and carers about their experiences.

The survey will close on 1st of July!

Please take part in this survey, so that your experience can help the Blood Cancer Alliance with its important research into patient access to treatment in the UK.

It should take a maximum of 10 minutes to fill in.

About the Blood Cancer Alliance

The Blood Cancer Alliance (BCA) is a group of fourteen UK charities working together to tackle the issues blood cancer patients face, and improve the experience and outcomes of all those living with blood cancer. MDS UK Patient Support Group is a proud member of the Alliance. You can find out more about the BCA here: https://www.bloodcanceralliance.org

The survey is anonymous and the Alliance will not collect, store or use any data from which individuals responding can be identified. All the responses to this survey will be analysed by a researcher and will not be shared with any other external third party.


Coronavirus and MDS: Advice and implications for blood cancer patients

Shielding advice from government – 22 June 2020 - What do you need to do if you are extremely vulnerable?

The government has issued some further changes regarding shielding and vulnerable individuals today. Measures are being put in place – according to levels of vulnerability.

Matt Hancock stated the “Everybody in the ‘clinically extremely vulnerable’ categorisation will be written to from today outlining these steps.”

Here are the main points:

Shielding guidance will be relaxed in stages, subject to clinical evidence. The new advice to patients will now be:

From 6 July:

  1. “You may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing;
  2. You no longer need to observe social distancing with other members of your household;
  3. In line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other's homes, including overnight, without needing to socially distance. This is a small advisory change that brings those affected a step nearer others in their communities.
  4. However, all the other current shielding advice will remain unchanged at this time. the guidance for the clinically extremely vulnerable will be relaxed to allow shielded individuals to meet up to 5 people from other households outdoors, socially distanced, and to form support bubbles if they live alone or are a lone adult with a dependent under 18.”

From 1 August:

  1. “The advice to ‘shield’ will be paused.
  2. From this date, the Government is advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble.
  3. You can go to work, if you cannot work from home, as long as the business is COVID-safe;
  4. Children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers.
  5. Where possible children should practise frequent hand washing and social distancing;
  6. You can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing; and
  7. You should remain cautious as you are still at risk of severe illness if you catch Coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.”

The food and medicine boxes facilitated by the National Shielding Service will stop as of 1 August as individuals are advised they can visit shops and pharmacies.

However, other forms of support – such as priority supermarket delivery slots and the NHS Volunteers Scheme, amongst a range of local volunteer schemes – will continue.

If an individual is concerned about support after 1 August, they should contact their local authority.

The categorisation of ‘clinically extremely vulnerable’ will remain in place and people in this cohort should continue to follow the guidance specific to them, available here. After 1 August, we will continue to maintain the Shielded Patient List. We will monitor the virus continuously over the coming months and if it spreads too much, we may need to advise this group to shield again.

Shielding guidance has been and continues to be advisory.

Everybody in the ‘clinically extremely vulnerable’ categorisation will be written to from today outlining these steps.

With regards to people in employment: Matt Hancock has encouraged employers to “do the right thing” by their vulnerable employees.

Let us know if your employer has issues, or encounters difficulties in ensuring your place of employment is covid safe enough for your potential return to work.
We will be collecting evidence of issues.

Lastly - 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.

Article written by 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. Travel precautions

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 - Updated on May 31st 2020

Overview - Coronavirus (COVID-19)

COVID-19 is a new illness that can affect your lungs and airways. It's caused by a virus called coronavirus.

What's the risk of coronavirus in the UK?

The UK Chief Medical Officers have raised the risk to the public from moderate to high.

Health professionals are working to contact anyone who has been in close contact with people who have coronavirus.

Symptoms of coronavirus

The symptoms of coronavirus are:

  • a cough
  • a high temperature
  • shortness of breath

But these symptoms do not necessarily mean you have the illness.

The symptoms are similar to other illnesses that are much more common, such as cold and flu.

How coronavirus is spread

Because it's a new illness, we do not know exactly how coronavirus spreads from person to person.

Similar viruses are spread in cough droplets.

It's very unlikely it can be spread through things like packages or food. 

Guidance on how to protect extremely vulnerable people from COVID-19

Extremely vulnerable people have a high risk of getting seriously ill with coronavirus (COVID-19) requiring admission to hospital.

You are extremely vulnerable if you:

  • have had an organ OR STEM CALL TRANSPLANT in the last 6 months or are still taking immunosuppressant medicine
  • are having active chemotherapy or radical radiotherapy for lung cancer
  • are having immunotherapy or other continuing antibody treatments for cancer
  • are having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • have blood or bone marrow cancer, such as leukaemia or MDS
  • have a severe chest condition, such as cystic fibrosis, severe asthma or severe COPD.
  • have a rare disease and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell)
  • You are on immunosuppression therapies sufficient to significantly increase risk of infection.
  • You are pregnant with significant heart disease, congenital or acquired.

The NHS has identified over 1,000,000 extremely vulnerable people who should practice social shielding, and they should have all received an official letter from the NHS. If you have not received a letter or have not been contacted, but you think you fall into this group, you can  register yourself on this gov.uk website. Contact your GP or clinician after you register with this service.

It is also particularly important for people who:

  • are 70 or over – AS IS THE CASE FOR ABOUT 80% OF MDS PATIENTS
  • have a long-term condition – MDS INCLUDED
  • have a weakened immune system – AS IS THE CASE FOR MANY MDS PATIENTS

Handwashing and respiratory hygiene

There are general principles you should follow to help prevent the spread of airway and chest infections caused by respiratory viruses, including:

  • Wash your hands frequently with soap and water for at least 20 seconds or use a hand sanitiser.
  • Do this after you blow your nose, sneeze or cough before you eat or handle food and always immediately when you return home
  • Avoid touching your eyes, nose, and mouth with unwashed hands
  • Cover your cough or sneeze with a tissue, then throw the tissue in a bin
  • Clean and disinfect frequently touched objects and surfaces in the home

You can spread the virus even if you don’t have symptoms.

As the situation is changing each day, please keep checking the this Government web page, or with your healthcare team if necessary, for the most up-to-date advice.

Worried about contact with coronavirus? How to self-isolate

Call 111 or use 111 online if any of these apply to you:

  • You think you might have coronavirus or
  • You’ve been in contact with someone with coronavirus  do not leave your home. This is called self-isolation.

If you are self-isolating, you must:

  • not leave your home for any reason, other than to exercise once a day – but stay at least 2 metres (3 steps) away from other people
  • not go out to buy food or collect medicine – order them by phone or online, or ask someone else to drop them off at your home
  • not have visitors, such as friends and family, in your home
  • You can use your garden, if you have one.
  • Do not visit your GP, pharmacy or hospital.

You may need to do this for up to 14 days to help reduce the possible spread of infection.

Read more coronavirus self-isolation advice.

Treatment for coronavirus

There is currently no specific treatment for coronavirus.

Antibiotics do not help, as they do not work against viruses.

Treatment aims to relieve the symptoms while your body fights the illness.

You'll need to stay in isolation away from other people until you've recovered.

Coronavirus Structure

Coronavirus Structure

Part 2. Implications for blood cancer patients

If I have blood cancer, is there anything else I need to do?

If you are at higher risk you are advised to:

  • Be more meticulous about doing everything advised above.
  • Limit the time you spend with other people.

The NHS should have contact by Monday 30 March 2020 if you are at particularly high risk of getting seriously ill with coronavirus to give specific advice about what to do.

If you think you fall into one of the categories of extremely vulnerable people listed bellow and you have not received a letter or been contacted by your GP, you should register here and then discuss your concerns with your GP or hospital clinician.

Your team may find ways to reduce you spending unnecessary time in the hospital too, for example by doing more telephone consultations or offering home/local blood tests.

Many of the MDS consultants have already put such plans in place. Call your Nurse to find out if this is an option for you. 

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.

If you’ve been in contact with someone with coronavirus in the last 14 days, then you should call 111 or use 111 online (see the NHS advice on Coronavirus).

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

MDS UK has taken the decision to postpone all of their local patient groups – as a precaution.

This is following the advice of our clinical team and some of the hospitals where our groups are due to meet.
We are sorry for the disruption this will no doubt cause – but we would rather be safe than sorry.

The sooner everyone acts to curb the potential spread of the virus, the quicker the epidemic will slow down.
We also do not want our patients to feel they are missing out on a meeting – because they are being cautious.

The local group coordinators have been informed and notifications are going out to all our members by email and letters.

Thank you for your cooperation and understanding.

We will monitor the situation and update everyone as news and advice progresses.
Please keep checking our website.

Part 4. Travel advice about coronavirus

Upcoming travel plans

The Foreign & Commonwealth Office (FCO) now advises British people against all non-essential travel worldwide. This advice takes effect immediately and applies initially for a period of 30 days.

The COVID-19 pandemic has led to unprecedented international border closures and other restrictions. All countries may restrict travel without notice.

If you now need to change or cancel your travel plans, follow these steps:

  1. contact your airline, travel company, cruise line or other transport and accommodation providers
  2. get in touch with your insurance provider
  3. continue to follow the NHS coronavirus guidance

The FCO was already advising against all but essential travel or all travel to some areas or countries due to risks that do not relate to COVID-19. This advice remains in place. Check FCO travel advice pages for the latest information.

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.

But if you are worried, you can call 111 or use 111 online to check your risk.

If you feel unwell

If you feel unwell, contact your healthcare team as usual.

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 – see our coronavirus advice for travellers
  • you've been in close contact with someone with coronavirus

Use the 111 coronavirus service

More Information

Do not go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.

Government response and action plan

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page


UK MDS Forum guidance during COVID-19 outbreak

Issue date – 5 June 2020
Writing group: UK MDS Forum and NCRI MDS subgroup
Consultants – please contact any member of the subgroup members for further advice if required, or:
Prof David Bowen, Lead for Writing Group, Leeds.
Dr Sally Killick, NCRI MDS chair, Bournemouth
Dr. Dominic Culligan, UK MDS Forum Chair, Aberdeen

This is a set of consensus recommendations for clinicians created to bridge the unprecedented burden that the COVID-19 pandemic is placing on the NHS. The guidance will be reviewed at the end of July 2020 and will expire when the COVID-19 infection is deemed to no longer be clinically significant for MDS patients. Click here to download these recommendations.

COVID-19 virus is highly infectious and produces severe life-threatening pneumonia. The epidemiology is becoming clearer, resulting in the definition of patient groups at highest risk for severe disease.
The general advice on MDS Patient Support Group website should be followed

https://mdspatientsupport.org.uk/coronavirus-mds-blood-cancer-advice/
The rapid guidance from NICE for systemic anti-cancer therapy in the COVID-19 outbreak should be followed

https://www.nice.org.uk/guidance/ng161
As the daily number of new cases and deaths from COVID-19 infection falls, the NHS is starting to resume stalled activity. There is considerable geographic variation in the prevalence of COVID-19 infection, and each NHS organisation must decide if continuing with the following recommendations remains appropriate for them or whether they have a sufficiently reduced COVID-19 prevalence, and the capacity and staff resources to safely resume standard management of MDS patients.

The UK MDS Forum proposes the following more specific guidance for the interventional management of MDS patients during the period of continuing risk from infection with COVID-19. There is a limited (or no clear) evidence base for the majority of these recommendations which are practical and consensus in this unprecedented time of crisis.

Hypomethylating agents - azacitidine

New diagnoses of IPSS INT-2/High patients

  • Almost all patients will become neutropenic during the first 1-3 cycles of azacitidine therapy
  • Therefore consider whether a delay in initiating azacitidine could be acceptable to the patient and clinician. In the AZA-001 registration study, only 52% patients were treated within one year of original diagnosis (which for some, may have been lower-risk). Patients’ management should be assessed by the MDT on an individual basis and then discussed with the patient. Delay may be acceptable for the following groups but this is not an exhaustive list:
    • Patients with relatively well preserved blood counts (e.g. neutrophils >1)
    • Patients with stable blood counts for the preceding 3 months and neutrophils > 1
    • Patients with lower blast count (<10%)
    • Patients lacking good-risk ‘AML’ genetic / genomic characteristics
  • If azacitidine therapy deemed immediately necessary, consider using G-CSF and / or antibiotic prophylaxis through cycles 1 & 2 in order to try to prevent hospitalisation with neutropenic sepsis.
    • Where feasible and subject to local guidelines for home administration of azacitidine, consider alternative models of care to minimise hospital attendance for azacitidine injections
    • Blood count monitoring should not be reduced, continuing per local guidelines, but samples taken in the patient’s home where possible and attendance to hospital following, based on local blood product transfusion policy.

Patients already on azacitidine

  • Beyond cycle 3, if patients are deemed to be having clinical benefit, consider increasing interval between cycles to 6 weeks, or continuing 4-weekly but reduce to 5 days azacitidine per cycle. Note that there is no trial evidence for a switch from 4-weekly to 6-weekly intervals, but there is some (under-powered) randomised trial evidence that 5-day azacitidine cycles may be less efficacious than 7-day cycles.

Lenalidomide

  • For newly diagnosed patients with isolated del(5q) MDS who may be candidates for lenalidomide therapy, defer therapy and continue transfusional support
  • For responding patients established on lenalidomide, continue therapy

Intensive chemotherapy

  • No generalised guidance can be provided other than to suggest an individual patient risk:benefit assessment for delaying intensive therapy or considering alternative lower intensity therapy in the light of likely greater risk of treatment related mortality from COVID-19 infection after intensive chemotherapy.
  • Allogeneic stem cell transplantation
  • Again no generalised guidance can be provided other than to suggest an individual patient risk:benefit assessment for delaying stem cell transplant in the light of likely greater risk of treatment related mortality from COVID-19 infection

G-CSF

  • Patients with profound neutropenia and recurrent infection may temporarily be candidates for G-CSF provided this can be self-administered and does not increase attendance to hospital.

Transfusion

  • In an attempt to reduce hospital attendance all transfusion-dependent patients should be reviewed to assess if increased intervals between transfusions is possible without significant medical risk.

Is it safe to attend hospital? Watch this video of Prof Bowen with recommendations for patients


Is it safe to go to hospital? An update for MDS patients on their treatment during Covid

NHS services are gradually returning back to some normality

However it won’t be quite the same as pre-covid times.

We asked the MDS experts to explain what patients may expect in the weeks and months to come.

And – to remind all patients that despite covid, isolation, shielding  and perhaps not seeing your usual clinical teams, it is still VERY important to communicate any changes in symptoms to the relevant clinicians.

Teams are there to assist and treat.

It is safe to attend hospital.

There are Covid free zones and hubs set up to ensure all risks are minimised as much as possible.

Please do not ignore symptoms, do not delay contacting the GP, nurses, haematologist, or A&E if the need arises.

It is safe to attend hospital.

Watch our clip with Prof Bowen explaining what to expect regarding your MDS treatment

Many thanks to Prof Bowen, and all haematology teams across the UK for their great care in such difficult times.

Keep safe, stay well – physically and emotionally!

MDS UK team

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page


Covid: What we’ve learned for patient care. Watch the video

Our colleagues in the USA offered a free webinar on Friday, May 22nd, 2020 on the impact of COVID-19 on the lessons learned for bone marrow failure patients and what patients should do to protect themselves from the virus.

If you haven't been able to attend the webinar, or would like to watch the presentation again, please watch the video clip below:

Mikkael Sekeres, MD, MS discussed issues related to the impact of COVID-19 on the care of bone marrow failure patients and highlighted the high importance of patients remaining at home even as more areas reduce restrictions, adapting to telemedicine, and resuming treatments that may have been delayed.

He also answered questions from webinar participants during the Q & A session.

Mikkael Sekeres, MD, MS is Professor of Medicine and Director of the Leukemia Program at the Cleveland Clinic Taussig Cancer Institute. He is a global expert on bone marrow failure diseases and an active researcher in the area of MDS and AML. Prof Sekeres recently published a book about his experience as a haematologist/oncologist entitled "When Blood Breaks Down:  Life Lessons from Leukemia".


MDS has been added explicitly to the official NHS England list of Extremely Vulnerable people

In their most recent update from the 7th May 2020, NHS England have added MDS (Myelodysplastic Syndromes) specifically, to the government list of highly vulnerable people who should be shielding, isolating – and be receiving an official Vulnerable Letter.

We have received many calls from MDS patients and members, reporting that they had not received a Highly Vulnerable letter.

Some patients were even told by their GP’s that no isolation or shielding was necessary for MDS, as this disease was not on the official NHS England list of Extremely Vulnerable people.

MDS UK has been reporting these facts to NHS England directly, via the very helpful weekly conference calls set up by NHS England with all cancer charities, to gain feedback and ensure no issues are missed.

We thank Professor Peter Johnson and David Fitzgerald, who are running these conference calls.

In their most recent update from the 7th May 2020, NHS England have now added MDS (Myelodysplastic Syndromes) specifically, to the government list of highly vulnerable people who should be shielding, isolating – and be receiving an official Vulnerable Letter.

The document below is a direct request from NHS England to Cancer Alliance Leadership teams, to ensure all relevant patients are added to the official list of Vulnerable people, and be sent the letter to anyone who has not yet received one.

The new list avoids any possible doubt that MDS patients must shield, isolate and are entitled to government support

The image below is the new revised list of shielding groups, which includes MDS explicitly, to avoid any possible doubt that MDS patients must shield, isolate and are entitled to all government support.

This means:

Shopping Online

This will hopefully make it easier to get a preferential online shopping slot with supermarkets.

Alternatively, you can also make use of the smartphone app “Next door” which connects you to many people in your neighbourhood. Many people there are offering to help with shopping and various errands.
Or – NHS staff can request the NHS volunteers to assist you, via the GoodSam network. Any NHS staff can make such referrals to GoodSam for you, for shopping, errands, delivery of medication etc

Employment rights, return to work requests

This will also help clarify the situation for employers potentially requesting their employee with MDS to return to work as lockdown is starting to be eased.

If the work environment is not making it possible to isolate from other employees, or is not deemed safe enough, or if travel to work requires public transport for example, MDS patients can use this Vulnerable Letter to explain they are unable to return to normal work as early as non-vulnerable employees.

Patients and employers can contact HSE Health and Safety Executive (Sarah Albon) in case clarifications or assistance is needed in these circumstances.

Coronavirus Downing Street Briefing on the 12/05/2020: Vulnerable Groups will need to maintain shielding and isolation

This briefing clarified that people in the Vulnerable Groups will need to maintain shielding and isolation, beyond the official 12 weeks isolation for healthy individuals, and beyond the 15th June.

It was stated that it is not possible as yet to predict when people in the Vulnerable Groups will be able to relax the isolation and shielding measures.

The end of isolation for vulnerable people will need to be reviewed at a later date.

We will of course follow up and provide news as they come through.

We will keep in close contact with MDS experts – who will issue further guidelines as soon as relevant.

Stay home, stay safe

MDS UK

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page