this is archive.php

Coronavirus & MDS: Advice & implications for blood cancer patients – Updated on 05/08/2020

Latest shielding advice from government: What do you need to do if you are extremely vulnerable?

Shielding guidance update from NHS England. See below the latests advice to patients:

NHS England - Shielding Update 05/08/2020

The government has now decided that shielding will be relaxed, or paused, as of 1st August, including for extremely vulnerable individuals.

Patients have been advised of this change, according to the list of vulnerable individuals used to date.

Patients may be advised to shield again, if higher occurrences of COVID-19 develop in future.

In some areas of the UK, shielding is still in place, due to a higher number of COVID-19 cases, so please follow local guidance depending on where you live.

A COVID-19 risk stratification model is being developed, but there is no date yet for publication, or when it will be in full use.
We will provide further news when available.

For more details on all of the above points, and a list of FAQ – please see the information letter below:

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/06/C0624-shielding-letter-to-nhs.pdf

Please know you can also check with your clinical team regarding your vulnerability status, if you are unsure.

If you are working, and your employer is now insisting on a return to work, but you are not yet comfortable doing so, please be aware these measures are advisory. Speak to your HR department to clarify your situation, and explain MDS in more detail.

You can also ask your clinical team to provide a letter for your employer, specifying your level of vulnerability, and the reasons why a return to work may not be advisable in your situation.”

----

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. 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 - Frequently Asked Questions - Updated on 05/08/2020

These Frequently Asked Questions appeared on the latest NHS England update letter.

1. Is it really safe to stop shielding?

We have been clear that each step towards relaxing the shielding guidance should be taken carefully. People classed as clinically extremely vulnerable are still at risk of severe illness if they catch Coronavirus and should continue to take precautions, but the risk of catching Coronavirus is now sufficiently low, the Government believe that the time is now right to further relax the advice. The latest epidemiological data from the ONS COVID-19 Infection Survey shows that the chances of encountering Coronavirus in the community has continued to decline. Four weeks ago, on average only one person in 500 had the virus. Last week it was less than one in 1700. In addition, a test and trace system is now in place, including within schools, and there are robust measures in place to manage potential areas of higher risk.

2. Can I keep shielding if I want to?

The guidance for those classed as clinically extremely vulnerable continues to be advisory, and we have no plans to enforce it, so you can continue shielding if you want to. However, centrally provided food boxes and the Medicines Delivery Service will only be available while the advice is to shield, which is currently until the end of July. Beyond July, NHS Volunteer Responders can continue to help with collecting food shopping and medicines deliveries. Simply call NHS Volunteer Responders on 0808 196 3646 (8 am to 8pm) to access this support.

3. Can I go to all my hospital appointments now?

The NHS is preparing to gradually increase some important face-to-face services, but only where this can be done safely. Hospitals and other health facilities have been asked to put extra planning and protection in place for people who are at highest risk from Covid-19. These measures should be discussed with you in advance. Where possible, appointments will be offered using remote services such as a video or phone consultation. If you do need to attend hospital for planned (non-emergency) care, you will be asked to take some steps to ensure you can get the care you need in an environment that keeps you safe, as well as staff and other patients.

Admissions (including day surgery): if you are being admitted to hospital, you and any members of your household will be asked to isolate at home for 14 days prior. Where possible, you may be asked to complete a test within 72 hours before going to hospital. If you are unable to isolate effectively or be tested before coming to hospital, your admission may be rescheduled. This will be determined by your care team using clinical judgement and in consultation with you. Admissions teams will give you all the information you need when booking you.

Outpatient appointments: you should only attend your outpatient appointment if you have no symptoms of Coronavirus. While at the hospital/health facility, it is important that you comply with normal social distancing requirements.

4. Can I return to work?

Until the end of July, if you have been able to work at home, you should continue to do so. At this time, we do not advise clinically extremely vulnerable individuals to attend their place of 6 work (workplace/’onsite’) if this requires them to leave their home. This guidance remains advisory. From 1 August the Government is planning to further relax advice to those shielding, bringing it in line with the advice to the clinically vulnerable group. This means that if they are unable to work from home but can work on site, they should do so, provided the business is COVID-safe.

5. What if I don’t want to return to work?

You should look to come to an agreement with your employer and understand their specific policies around health and safety and workplace attendance, especially in relation to COVID19. If you have concerns about your health and safety at work, you can raise them with any union safety representatives, or ultimately with the organisation responsibility for enforcement in your workplace, either the Health and Safety Executive or your local authority. You can get advice on your specific situation and your employment rights by visiting the Acas website https://www.acas.org.uk/contact or calling the Acas helpline, 0300 123 1100.

6. I still need help with my food shopping?

Those in receipt of centrally provided food boxes, who continue to need help, will receive this support while they are advised to shield, until the end of July. This will give those shielding the time to adapt to advice that visiting shops, including supermarkets, is likely to be as safe as when they stopped these usual daily activities, provided they follow social distancing advice. Beyond July, NHS Volunteer Responders can continue to help with collecting food shopping. Simply call NHS Volunteer Responders on 0808 196 3646 (8 am to 8pm) to access this support. The Government also continues to support the use of priority delivery slots to help the clinically most vulnerable where possible. Priority delivery slots are at the discretion of supermarkets, but we can confirm that seven supermarkets have given access to priority supermarket delivery slots that will continue beyond the end of July for those already signed up for support.

7. Can my children go back to school?

From 1 August the Government is planning to further relax advice to those shielding, bringing it in line with the advice to the clinically vulnerable group. This means that children can return to school/nursey. Where possible children should maintain social distancing and try and practise good, frequent hand washing. The latest advice can be found on GOV.UK.

8. When might you bring shielding back?

The latest scientific evidence shows that the chances of encountering Coronavirus in the community has continued to decline. The Government regularly monitors this position and if the rates of infection in the community rise, then it may be necessary to advise that more restrictive measures should be taken.

9. What is the guidance for the clinically vulnerable?

Public safety throughout this period is the Government’s top priority – this includes keeping safe society’s most vulnerable.

We advise those who are clinically vulnerable to follow the Staying Alert and Safe social distancing guidance available on the gov.uk website.

The advice is to stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household or support bubble. By this we mean always staying 2m apart from others outside your household or support bubble, avoiding crowds, and keeping your hands and face as clean as possible.

10. Is the letter I’ve received real, telling me that I don’t need to shield anymore?

The letter you have received is from Government, signed by Matt Hancock and Robert Jenrick. This letter will have arrived between 24 and 26 June. You can find a copy of the letter online at gov.uk.

11. Where can I find accessible or alternative formats of my shielding letter?

Translated, BSL and easy read versions of the letter can soon be found at gov.uk. If a patient is blind or partially sighted they can access audio or braille formats by calling the RNIB helpline at 0303 123 9999.

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.

In England, you're no longer advised to shield. But there are still things you can do to protect yourself and others. You can also still get some support.

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

If you think you fall into one of the categories of extremely vulnerable people, you should 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 - Updated on August 5th

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. Please also see our guidance on how to use Zoom. 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. Travel advice about coronavirus - Updated on August 5th

Upcoming travel plans

The Foreign & Commonwealth Office currently advises British nationals against all but essential international travel. Travel to some countries and territories is currently exempted.

This advice is being kept under constant review. Travel disruption is still possible and national control measures may be brought in with little notice, so check our travel guidance.

The global coronavirus pandemic is ongoing. No travel is risk-free, and disruption is still possible. If you plan to travel:

  • read the coronavirus travel guidance to make sure you are prepared for your travel
  • read the Travel Advice for your destination, for information on current entry requirements and any local coronavirus measures that you will need to follow
  • sign up for email alerts for Travel Advice to ensure you are informed of any changes while you are travelling

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

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

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page


The 20:20 Campaign Needs You!

Help us raise funds for MDS UK

MDS UK is taking part in the 20:20 Campaign with other rare cancer charities impacted by the Covid19 pandemic.

Participants simply must complete one “20” themed challenge (e.g. “20 minutes walking”, “20 cakes in 20 days”) a day starting on September 20th and encourage friends and family to sponsor them.

The challenges DO NOT have to be fitness based and you can be as imaginative as you like!

Knitting a carpet in 20 days

Organisers Sarcoma UK have predicted that the campaign could raise a total of £500,000 (or £25,000 for MDS UK).

With a celebrity potentially endorsing and promoting the campaign, we can also form closer relationships with other similar charities and raise lots of awareness.

Funds will be raised via one JustGiving campaign platform, so you don't need to worry about setting up individual JustGiving pages!

For this campaign to be successful, we need as many people to get involved as possible!

All funds you raise will go directly to MDS UK, ensuring we can continue our life-changing work! As the campaign strapline says: “Cancer doesn’t stop for Covid!”

If you’d like to participate or want more info, please contact Jan Edwards (Fundraising Officer) on fundraising@mdspatientsupport.org.uk

A link to the campaign JustGiving page to register your participation and further information will be posted when available.


Unique Stem Cell Transplants for Grandfather and Grandson

MDS UK Chairman, Ted Peel, and his grandson, Romain, are set to receive stem cell transplants within weeks of each other.

They want to raise awareness, encourage people to become stem cell donors and generate essential financial support for MDS UK and Teenage Cancer Trust

Ted Peel and his grandson Roman

Ted: “It’s great to be given another chance at life”

Ex-lawyer Ted was diagnosed with MDS in 2015 following extreme fatigue, regular coughing up and passing of blood and several bone marrow biopsies.

“Following an unsuccessful period of G_CSF to remedy low a white blood cell count, I was hospitalised three times with sepsis where my temperature plummeted to 32C”, says Ted.

“Fortunately, I found considerable support and knowledge within the MDS Patient Support Group, a charity supporting patients and carers.”

MDS (Myelodysplastic Syndromes) is a group of malignant blood disorders in which the bone marrow fails to produce healthy blood cells. All types of blood cells can be affected, causing a range of symptoms, anaemia and frequent infections being amongst the most common ones. Ted was prescribed prophylaxis antibiotics to prevent further infections, but they continued including some in his mouth, triggering hospital admissions and weight loss.

“My transplant treatment scheduled for this spring was sadly postponed as it was deemed too unsafe for me to be admitted to the hospital due to Covid19”, says Ted.

Fortunately, he was told in July that he would be admitted promptly for the treatment at Kings College Hospital as cases of Covid19 in London have decreased.

“It’s great to be given another chance at life”, says Ted. “I want to say thank to MDS UK and the doctors and nurses in the Haematology Dept. of the hospital for their support."

Romain's Story

Romain began experiencing migraine headaches and fatigue while studying for A Levels and was prescribed pain medication in the belief that exam stress was the cause.

After a prolonged period of deterioration and persistence by his Mother and Grandmother, he was finally diagnosed with Acute Lymphoblastic Leukaemia (ALL) in September 2019.

Romain 18th birthday

Romain: “Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”

Further tests found that he also had the Philadelphia malignancy (Ph+) - an abnormality of chromosome 22, where a piece of chromosome 9 and chromosome 22 break off and attach.

“Although my specific mutation complicates my treatment, I was really interested in the genetics behind it”, says Romain. “I’ve learnt a lot going through my diagnosis and treatment.”

In paediatric patients with ALL, the Philadelphia malignancy is uncommon and very high risk, with only 20%-30% of people being cured by chemotherapy alone.

Indeed, six months of systematic chemotherapy failed to cure Romain, who was informed that he needed a stem cell transplant.

“It was a scary situation, but I was mentally prepared for it” says Romain. “I’m aware that most Ph+ cases result in a transplant to prevent relapse scenarios.”

Fortunately, Romain’s 16-year-old sister Sidonie was a 12/12 match and donated some of her stem cells to be transfused to her brother. Romain is currently starting his transplant journey at The Royal Marsden Hospital.

“There’s many possible dangers, yet again I found myself interested in the science”, says Romain. “The genetic implications of being a chimera are fascinating! I can’t wait to be allowed out with my mates again!”

How to donate bone marrow

If you’re between 16 – 30 and in good health, sign up to Anthony Nolan's register and you could be a lifesaving match for someone with blood cancer

You Can Become a Donor!

Even if you’re older than 30 you can become a blood donor if you're in good health. Check your eligibility at the dkms site

Familial blood cancers

With Ted, Romain and, previously, Ted’s Grandfather suffering from forms of blood cancer, their stories link to the wider issue of whether the diseases can be inherited.

In June 2019’s MDS UK newsletter, Professors Jude Fitzgibbon, Tom Vulliamy and Inderjeet Dokal of Queen Mary University of London considered familial MDS: https://mdspatientsupport.org.uk/wp-content/uploads/2019/08/20266-MDS-Newsletter-Jun2019-v10.pdf (page 7).

They found the phenomenon to be rare but claim that many genes have been identified that are responsible for an inherited predisposition to MDS.

Their research has highlighted the importance of making specific modifications to therapy to achieve optimal outcomes and greater awareness among haematologists, enabling more tailored management of at-risk individuals.

To learn more about it, watch this video about familial MDS.

Appeal: MDS UK Support Group and Teenage Cancer Trust need your help today

“However, more support is necessary, and we want our combined journeys help to generate essential funds for our respective favourite charities- MDS UK Patient Support Group and Teenage Cancer Trust”, says Ted.

MDS UK provides an array of support for MDS patients and recently funded its first research project, aiming at repairing damaged DNA in blood cancer. This would have positive implications for all blood cancers.

“Teenage Cancer Trust’s special hospital wards, nurses and youth support teams provide patients with emotional and practical support to get them and their families through some unimaginably hard times”, says Helen Farquharson, Senior Fundraising Manage at TCT.

“Romain is currently on a Teenage Cancer Trust ward” says Christine Peel, Romain’s Grandmother. “As well as supporting Romain, the charity’s staff there have been helpful, giving his Mum information, advice and directing her to support services. Their support has been invaluable.”

Both organisations need more financial support to ensure other patients have an easier time, especially during Covid19, which has seen the demand for services increase.

“We also urge more people to become stem cell donors, especially those from ethnic minority communities”, says Ted. “We would like to see a future where every blood cancer patient has a donor available and where cost is not an inhibiting factor."

It is only with this generous and selfless support that the care and treatments for blood cancer patients continue to be provided and improved.

MDS UK and Teenage Cancer Trust would like to wish both Grandfather and Grandson a safe and smooth procedure and speedy recovery and say a massive thank you for sharing their stories!

To donate to MDS UK and Teenage Cancer Trust, visit the campaign VirginMoneyGiving page on: https://uk.virginmoneygiving.com/TedRomain

For queries about MDS, familial MDS, or general enquiries, email info@mdspatientsupport.org.uk or call 020 7733 7558.

You find other ways to donate on our website: https://mdspatientsupport.org.uk/fund-raising-2/donate/

For more information on Teenage Cancer Trust and to donate, go to: https://www.teenagecancertrust.org/

To read Ted and Romain's full story go to: Ted and Romain: The full story

If you are interested in fundraising for MDS UK or have any related queries, contact Jan Edwards on fundraising@mdspatientsupport.org.uk

Connor, Ben, Joe and Jeff will walk the 37 miles from Ashford to Ramsgate!

Connor Stalker and Ben, Joe and Jeff Watson will be walking 37 miles from Ashford to Ramsgate to raise vital funds for MDS UK!
Gardener Connor, who is just 23, met our Chair Ted Peel and his wife Christine when attending to their garden.

After befriending the couple and hearing about Ted’s struggles with MDS, Connor was struck by how the disease affects patients and their loved ones.

He showed his three friends MDS UK’s information booklet and they decided to turn their planned walk into a fundraiser for our cause.

Starting at 7:30am, they aim to reach Ramsgate by 17:30- a 10 ½ hour walk. Between them, they hope to raise a massive £1000 for our life-changing work!

“I believe every life matters and I’m tired of seeing people pass away too soon. I want to give something back as Christine and Ted are good friends of mine.

I just want to do something. I want people to realise that everyone has their own struggles and to make the most of what you’ve got because it can change so quickly.

I always try to keep smiling, help people along the way and treat others as I want to be treated.

If I can save even a few people, then that would mean something to me.”

Fiona Christie

Connor and his friends need your help! With the donations of generous supporters, their target can easily be reached and surpassed.

Please go to the event JustGiving page on https://www.justgiving.com/fundraising/connor-stalker to donate as much as you possibly can!

Thank you so much Connor and friends for deciding to help us in this way! You’re amazing!

Unorganised events like this are essential at a time where most of our fundraising events have been cancelled due to Covid19.

If you have a similar fundraising idea and would like to discuss it, please contact Jan Edwards (Fundraising Officer) on fundraising@mdspatientsupport.org.uk.


New! MDS UK online meetings for patients and carers

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

Hence, we've started organising Zoom meetings for the last couple of weeks. Feedback has been very positive and we were able to resume local group activities, as well as holding nationwide meetings on specific topics.

Join our Online Zoom Meetings

Check the calendar

On the 22nd of July, we had a very informative nationwide meeting on Clinical Trials and Research in MDS & AML During CoVid. Our Guest Speaker was Dr Austin Kulasekararaj, Consultant Haematologist at King's College Hospital.

Forty people attended the meeting, and Dr Kulasekararaj gave an introduction to the subject, tailored to the audience, and addressed patient's questions.

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.

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. Please also see our guidance on how to use Zoom. 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.

If you have not contacted the MDS UK Patient Support Group before and would like to receive a full Patient Information Pack, please contact our Main Office.


Living with MDS: on second opinions, Corona times and caring

Our colleagues in the USA have produced an inspiring video as part of their international Patient & Family conference on this past weekend.

In the video, American television broadcaster and MDS patient Robin Roberts talks to Gail J. Roboz, MD is professor of medicine and director of the Clinical and Translational Leukemia Program at the Weill Medical College of Cornell University about second opinions, what it means to live with MDS in times of Corona and the important function that carers and patient groups play in wellbeing.

Robin Roberts - Gale Roboz Conversation - minimatters

You are invited to attend our online patient meetings!

Have a look at our Patient Meetings calendar to find an online local group meeting, or a Nationwide one

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


Supporting You Remotely: Covid19 has not stopped us!

The coronavirus pandemic has affected everyone associated with our MDS UK charity. We have a committed team of staff and committee members, working tirelessly on a virtual basis to provide excellent care to those who need us most.

Our office and headquarters are based at King’s College Hospital in South London, one of the largest hospitals in the country. In line with government recommendations, we opted to move all our staff to work from home. Social distancing in our tiny office would barely have worked for 2 people, let alone 4!

Therefore, our office staff faced some big changes as we temporarily vacated our office on March 19th. Closing the door on our ordinary working lives, we have been working from home since then; a challenging period as we strive to maintain the vital and life-changing work of MDS UK.

Sophie: "What has been difficult to manage is the amount calls and emails from understandably concerned and confused MDS patients"

Sophie Wintrich has been CEO of MDS UK for 10 years and never experienced times like this. “I started this job working in a tiny window-less ex-kitchen office, have worked on trains, planes, in hotels, and the odd few days at home, but always coming back to base.

Moving our entire (albeit small) team to a home setting, whilst training a fairly new staff member, and a brand new person we had only ever met in the interview has been an interesting challenge.
Technological hiccups aside, managing the team remotely has actually been a positive experience, as everyone focussed on making sure we stayed effective and connected whilst getting to know each other a bit better!
We already had some experience of working remotely with many people, such as our fantastic web-editor, Manuela, who moved to Israel 2 years ago. We miss meeting up with her but Zoom calls provide a nice connection.
We also have out talented Newsletter editor, Lorna, based in Scotland who we have never met face to face. Not forgetting our amazing website architects, Mariano and Eduardo – who we rarely see in person. Finally, we also work remotely with many of our group coordinators, our committee, and of course the clinical experts.
What has been difficult to manage is the amount of work, due to the many calls and emails from understandably concerned and confused MDS UK members, as well as new MDS patients. The pace at which information about COVID-19 changes has been hard to cope with.
Accepting that some normal projects were put on hold has been frustrating. Adapting to new ways of providing information has been challenging, but also very useful. We have had to learn fast about new communication options, such as hosting Zoom meetings and ensuring these are conducted safely and reliably.

Coronavirus and MDS: Implications for Blood Cancer Patients

Learn more about the guidelines and recommendations for extremely vulnerable patients

This new way of working has exploded, and my working day is overloaded with online meetings, webinars, and virtual conferences. There are more events than ever before – and all from the same seat and corner of my bedroom. I have days without moving much, with a headphone or earphones stuck to me constantly.

Many of my UK counterparts and those abroad have experienced the same issues of webinar Zoom fatigue – and all of us will need to learn a new equilibrium of work-life balance, until a vaccine is found. But one thing is sure, Covid has not stopped us – and it is clear that all involved in support for patients are a determined bunch.

Chaudian: “Updates are now conducted by email or phone and meetings via Zoom, providing a form of human contact”

“We haven’t had to deal with something like this before”, agrees Chaudian Morgan, Admin Officer. “It’s been very taxing, and I’ve struggled to accept the current reality. There’s construction next door and screaming children. I could usually go to a library, but they’re closed. Many are also dealing with the mental, emotional and financial impact of Covid19.”
As a small office team of five (two full timers, two part-timers and one volunteer), roles at MDS UK overlap. We work together, assisting with others’ often unenviable workloads and giving advice. We have meetings, updating colleagues on various projects and boosting team morale, ensuring the smooth day-to-day running of all MDS UK operations.
However, updates are now conducted by email or phone and meetings via Zoom (a video conference program.) Excluding technical problems, these have gone smoothly, providing a form of human contact. “Without my weekly Zoom calls, I would have felt very isolated so thank the world we have amazing technology”, says Caroline McGovern, Admin Officer.

Chris: "Thankfully, we are now able to access everything we could in the office, including MDS UK equipment"

Chris Charlwood, Finance Volunteer, echoes this: “The bad news for me is that I will now be doing more work! I usually do one day a week at King’s plus committee meetings. However, as the online working plan is now fully implemented, I can work anywhere. This is good, as I often had to leave things half finished, then remember where I got to a week later.”
There have been some practical issues setting ourselves up at home with laptops and adapting to the online systems. Thankfully, we are now able to access everything we could in the office, including MDS UK equipment (T-shirts etc) which Caroline kindly collected and posted to our amazing virtual fundraisers. We have slowly adapted.

Caroline: "Both my girls just want to see their nannies and give them big hugs"

“At first it was difficult for everyone to find a space to work and concentrate”, says Caroline. The worst part for my family has been not being able to see mine and my partner’s Mums. We are extremely close, and both my girls just want to see their nannies and give them big hugs. However, I think everyone is now settled and work has become easier.”

“My stepson moved in with me in February and we initially struggled to get into a routine” says Chris. “We now circle round the house settling in different spots depending on who’s working, conference calls, the need for space and who’s cooking dinner! However, we have quite a big house with a garden to escape to, so we fare better than others and feel lucky.”

Jan: "Everyone I’ve met online has been welcoming and supportive. It’s been tough mentally but I’m enjoying the challenge!"

MDS UK also welcomed its first Fundraising Officer, Jan Edwards on March 31st, shortly after lockdown began. This was an interesting time to start the role, with the postponement or cancellation of the events that MDS UK relies on heavily for income. Jan has not yet been physically introduced to his office colleagues since being interviewed by Sophie in February.
“It felt strange starting this job in isolation as I was supposed to work in the office until I’d settled”, says Jan. “However, everyone I’ve met online has been welcoming and supportive. I’ve had to be proactive and adaptable, familiarising myself with different systems and fundraising in these strange times. It’s been tough mentally but I’m enjoying the challenge!”
Indeed, maintaining good mental health is key for staff to work effectively. With many outdoor activities banned and all gyms closed, directed exercise is a lot less accessible. Humans are social animals and with social activities banned and remote working the new norm, loneliness can start to set in. We’ve all had to keep busy.
“Mental health is vital right now”, says Caroline. “My eight-year-old finally mastered her bike so we’ve been going on family bike rides. I’ve never enjoyed cooking or baking but I’ve mastered bread making and my cakes are now yummy. It’s all very therapeutic. The MDS Team may need to go on a diet when we return to the office and they sample my treats!”

At MDS UK, we always want our patients and their loved ones to remain calm and offer them some advice. “To everyone, I say take a deep breath, relax and we will all get past this”, says Caroline. “In the meantime, stay home, stay safe and stay connecting to those you love and make you laugh.” As Chaudian puts perfectly: “These days won’t last forever”.
The MDS UK team. (June 2020)

For anyone needing advice or support, go to our website: www.mdspatientsupportgroup.org.uk
Alternatively, you can email us on info@mdspatientsupport.org.uk or call us on 020 7733 7558.


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


Update to MDS Patients: Registration on the Extremely Vulnerable list is now closed

The service is not open for new registrations at the moment, because people aren’t being advised to shield in most of England from 1 August 2020.

The last boxes of food and basic supplies will be sent out by 31 July.

If you’ve already registered and got priority access to supermarket deliveries, you’ll keep it. Contact your local authority if you need urgent help.

You can read general guidance on protecting yourself if you’re clinically extremely vulnerable to coronavirus.

If you live in Leicester and need extra support

If you’re clinically extremely vulnerable to Coronavirus and live in Leicester you should ‘shield’ until you’re told you do not need to. If you’re shielding and need help getting essential supplies, contact Leicester City Council.

If you have MDS – Myelodysplastic Syndromes – and have queries about the changes in the guidelines – call MDS UK on 02077337558 (blood cancer patients only).

Please spare the clinical staff who are overwhelmed with calls and emails.
Advice is: If you have MDS – do follow the guidance for vulnerable people.
Do self-isolate and shielding precautions.

If you need support for food delivery, call the GOVERNMENT Coronavirus (COVID-19) helpline - 0800 028 8327

Please help us support more patients!

Donate on MDS UK Virgin Money Giving Page


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!

The survey about access to blood cancer treatments has now closed

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.