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Luspatercept – lobby your local MP!

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MDS Patient Support

Luspatercept (also known as Reblozyl) is a drug widely used in the US, EU, Australia and Canada to treat MDS patients.

It was expected to be available in the UK by now, but last year the manufacturer, Bristol Myers Squibb, withdrew its application to NICE for licensing in the UK.  The reasons for this are unclear but believed to be commercial.

Luspatercept can be beneficial for MDS patients, especially those with a particular sub-type, and BMS’s decision to withdraw was a blow to the blood cancer community.

One of our members, Angela Wilson, has successfully lobbied her local MP, Chancellor and ex Health Minister Jeremy Hunt, who has personally agreed to take this up with current Health Minister Victoria Atkins.

Campaign for Luspatercept in the UK

To lend your voice to this campaign you could lobby your own local MP. We've drafted a letter you may like to use which you can download from here.

Shingles vaccine: now available from age 50 for the immunocompromised

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Shingrax Shingles vaccine for the immunocompromised 2024

 

The shingles vaccine is now available for those aged 50 and over with a suppressed immune system - which includes those with MDS and CMML. Your GP surgery will usually contact you when you become eligible but speak to your GP if you haven't yet been contacted.

 

What is the Shingles vaccine for?

The NHS website states

Shingles is a common condition that causes a painful rash. It can sometimes lead to serious problems such as long-lasting pain, hearing loss or blindness. You're more likely to get shingles, and it's more likely to cause serious problems, as you get older or if you have a severely weakened immune system.

The shingles vaccine helps:

•reduce your chances of getting shingles

•reduce your chances of getting serious problems if you do get shingles

For more on shingles see https://www.nhs.uk/conditions/shingles/ 

 

Shingrix non-live vaccine

People with weakened immunity receive the non-live vaccine, Shingrix, which involves two doses given 8 weeks to 6 months apart. For more information see Shingrix vaccine patient leaflet (Electronic Medicines Compendium website; PDF only, 136kb)

Important

You can get shingles more than once, so it's important to get vaccinated even if you've had it before. Don’t delay. If you are eligible, try to have your vaccine as soon as possible.

For more information

Covid lateral flow tests for the immunocompromised:  now available from pharmacies

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Covid-19 lateral flow test - free from chemist for immunocompromised
Access arrangements for Covid-19 tests have recently changed.  Eligible patients - which includes those with CMML and MDS – can now get free lateral flow tests (LFTs) at their local chemist, as these can no longer be ordered through the government website or via NHS 111.
You can either pick the tests up yourself or ask someone to do it for you.  You (or your representative) will need to take proof of eligibility, which can be your letter of diagnosis, or any consultant or GP letter which mentions your condition and/or the supportive care you are receiving.  It is possible your regular pharmacy may already have a record of your condition, but it’s worth taking proof just in case.

 

For more information

See 'Treatments for COVID-19 - NHS' (www.nhs.uk) for more details.

‘Lifestyle medicine for improving health & wellbeing’ – a presentation by Dr Shireen Kassam

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Dr. Shireen Kassam MB BS, FRCPath, PhD, DipIBLM is a Consultant Haematologist and Honorary Senior Lecturer at King's College Hospital, London. She is is also a certified Lifestyle Medicine Physician and is passionate about promoting the benefits of plant-based nutrition for the prevention and reversal of chronic diseases and for maintaining optimal health after a cancer diagnosis.
In this video Dr Kassam presents a 35-minute introduction to evidence-based Lifestyle Medicine. She explores how it can empower individuals living with MDS, offering practical actions to enhance health and well-being.  The session was chaired by Maureen Sturrock, Local Patient Support Ambassador (Scotland region).

Dr Shireen Kassam, consultant haematologist and Honorary Senior Lecturer at King’s College Hospital, London and a certified Lifestyle Medicine Physician.

MDS Patient Support

September 2023 is Blood Cancer Awareness Month

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The MDS Alliance is raising awareness of myelodysplastic syndromes (MDS), a rare group of blood cancers. This year's campaign targets patients, healthcare professionals, and the general public and aims to highlight awareness about; MDS symptoms, diagnosis and treatment options, and self-management of the disease.

About Myelodysplastic Syndromes

For more detailed information, explanations, videos or to download our patient handbook 'Understanding Myelodysplastic Syndromes', see What is MDS?
The cause of MDS remains largely unknown although there are many research groups around the world who are trying to improve our understanding of why it occurs and in whom.

What are the symptoms of MDS?

If you spot the symptoms of MDS, take next actions quickly. 

MDS is difficult to diagnose so by raising awareness of the signs and symptoms and taking action to get a blood test, the campaign aims to improve diagnosis.  As with all cancers, fast action enables faster diagnosis and better treatment. For more see MDS Symptoms

If you notice the signs or symptoms above, Get a #BloodCount

If you feel you have the symptoms outlined above, you can get a very simple bloodtest at your local GP called a full or complete bloodcount.

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. If you see the signs and symptoms, get a complete #BloodCount

 

Complete Blood Count test

How is MDS diagnosed?

Click or tap the arrows to see the slides.
For more see MDS Diagnosis

How is MDS treated?

Click or tap the arrows to see the slides.
For more see MDS Treatments

How can others support people with MDS?

The NHS Blood Donation website  explains how to become a blood donor; where you can give blood, about the donation process, and how to make an appointment. It's such a worthwhile thing to do, and really does save and improve lives.

Visit the Anthony Nolan website to find out more about how to donate bone marrow, and how to join the stem cell register (it’s easy!)

Download a brochure about MDS

Download brochure about MDS

For more information, download the A5 brochure about MDS from the MDS Alliance.

Congratulations to our amazing team MDS UK who ran the iconic Great North Run!

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The start was very hot which made running tough but our Great North Run team made great time. Thankfully all our runners were through before biblical rain hit the site. It certainly was a memorable day.

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Fiona Christie and Chris Newton

Fiona from Turiff and her brother Chris from North Berwick ran for their Mum, Marion who was diagnosed in 2012. 

“We are both delighted to be running in the Great North Run 2023 for MDS UK. Our Mum was diagnosed with MDS in 2012 and gets ongoing support and information from MDS UK. The Great North Run is extra special for us as it takes place in Newcastle which is our dads hometown, (Howay the lads (&lassies)) Mum & Dad are both coming down to support us on the day and it will be amazing to have them along with us and see them when we cross the finish line ?”

Fiona's race time - 02:06:01

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Chris' race time - 02:00:18

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Carol Archer 

Carol (in the red) is from Sunderland and is a friend of our acting CEO Debbie Hickman and her late husband Neil. 

Carol's race time - 02:36:39

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James Law 

James ran for his dad Colin Law

“Unfortunately my dad has MDS and so I’ve chosen to do the GNR to raise funds for the charity that is providing him with help and support. I hope that you can support me, him and the charity also with a kind donation!”

James' race time - 01:57:50

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Richard Kadar 

Another fantastic race run by Richard (after raising over £2,000 from a run back in 2022.)

Richard's race time - 01:49:16

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Thank you 

We would like to extend our heartfelt thanks to all our runners. Your hard work and commitment to MDS UK Patient Support is greatly appreciated and makes a huge difference to the lives of those affected by MDS and CMML.

If you would like to join the 2024 team, please get in touch. Registration is free and minimum sponsorship is £375 – contact Ashleigh Venables at fundraising@mdspatientsupport.org.uk

 

Flu & COVID-19 vaccines brought forward to September 11th 2023

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How to get your Covid-19 vaccine this autumn 2024

The Flu and COVID-19 vaccine programmes will start earlier than planned this year, on September 11th, because of the emergence of a new COVID-19 variant, BA.2.86.

This is a precautionary measure as BA.2.86 is not currently classified as a variant of concern, but advice from UK Health Secretary Agency suggests that speeding up the autumn vaccine programme will give greater protection, supporting those at greatest risk of severe illness and reducing the potential impact on the NHS. Health secretary Maria Caulfield explained,

"As our world-leading scientists gather more information on the BA.2.86 variant, it makes sense to bring forward the vaccination programme...It is absolutely vital the most vulnerable groups receive a vaccine to strengthen their immunity over winter to protect themselves and reduce pressure on the NHS."

Flu and COVID-19 vaccines will be offered together

The annual flu vaccine will also be made available at the same time, wherever possible, to ensure people are protected ahead of winter.

Specific groups to be offered the booster vaccine from September 11th 2023 are (as outlined by the The Joint Committee on Vaccination and Immunisation)
    • residents in a care home for older adults
    • all adults aged 65 years and over
    • persons aged 6 months to 64 years in a clinical risk group, as laid out in the Immunisation Green Book, COVID-19 chapter (Green Book). (Please note, this applies to all people with MDS and CMML).
    • frontline health and social care workers
    • persons aged 12 to 64 years who are household contacts (as defined in the Green Book) of people with immunosuppression
    • persons aged 16 to 64 years who are carers (as defined in the Green Book) and staff working in care homes for older adults.

For more information from gov.uk

NHS England will announce full details of the accelerated roll-out soon, and those who fall into higher-risk groups are being encouraged to take up the jab as soon as they’re invited. For more detail, follow the link to the official press release from gov.uk 

MDS World Awareness Day 2023

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MDS Patient Support

 

What is MDS World Awareness Day?

Every year on October 25, we come together with the MDS Alliance and others, to raise awareness of Myelodysplastic Syndromes (MDS).
Join us and support the campaign on behalf of MDS patients globally. There are lots of ways you can get involved; whether it's wearing one of our T-shirts for the day, sharing vital information about MDS signs and symptoms through social media, or by donating to MDS UK.  Whatever you can do will go towards improving the lives of MDS patients worldwide.

Why raise awareness?

Rare diseases like MDS often get misdiagnosed, forgotten or ignored. By raising awareness and sharing information, the hope is to
  • enable early detection and treatment of MDS by making people aware of the signs and symptoms. As with all cancers, fast action enables better treatment
  • foster understanding among the public about the challenges MDS patients face
  • help people to have more informed conversations with their healthcare professionals enabling access to specialist care when needed

Join us!

1 - Like and share our posts on social media using the hashtags below, and tag @MDSUK

 

Hashtags
#MDSWAD2023
#thinkMDS
#Bloodcount

Tag us @MDSUK

2 - Download and print posters to put up in your local community

Click or tap on any of the thumbnail images below to download a poster for your local GP surgery or supportive care setting.

 

Download a poster about MDS for MDS World Awareness Day 2023

Bruising

MDS Patient Support

Breathless

MDS Patient Support

Weakness

MDS Patient Support

Fatigued

3 - Donate to MDS UK on our Just Giving page

All funds, no matter how modest, are always welcome, every few pounds can truly make a big difference.

MDS UK Patient Support Group raises awareness of MDS, offers support and information to patients and families, campaigns to improve quality of life and make treatments available to those affected by Myelodysplastic Syndromes. Please donate to our Just Giving page.

 

REPAIR-MDS – a ground breaking clinical trial for low/intermediate risk MDS

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October 2024 - Update

Repair-MDS is now closed to recruitment.  Once there are results and data available, which is expected to be in early-mid 2025, we will post this here.

On behalf of the trial managers, the clinical team, and ourselves on the PPIE (Patient and Public Involvement and Education) front, can we take this opportunity to say a big THANK YOU to those members who signed up and actively participated.

A new diagnosis of low/intermediate risk MDS can be shocking – hearing you have cancer, that it's life limiting and that there are very few treatments available, may well be distressing. Often, the only real option for patients is to return home and 'watch and wait' until the next appointment, usually three months away. The REPAIR-MDS trial offered a chance to get involved in one of two new experimental treatment options.
MDS Patient Support

What is the REPAIR-MDS trial?

REPAIR-MDS is a ground-breaking clinical trial that aims to improve the symptoms and overall quality of life for patients with low/intermediate risk Myelodysplastic Syndromes.  Patients were put randomly into one of two treatment groups below. Both groups used drugs which are already used safely for other diseases (Repurposed drugs). 

Treatment Group 1 VBaP - Sodium Valproate (V), Bezafibrate (Ba), Medroxyprogesterone (P) 

Treatment Group 2 : Danazol.  

The study is trying to find out if these ‘repurposed’ drugs can be used to treat MDS patients and to improve their blood counts, reduce their need for transfusions, improve their quality of life, and prolong their survival.

Where are the trial sites?

The trial is taking place throughout the UK, is coordinated by the University of Warwick’s Clinical Trials Unit and was open in around 30 hospitals.

Follow the link to the REPAIR-MDS website for a regularly updated list of REPAIR-MDS trial sites

What's the trial duration?

September 2020 - June 2025

 

To find out more

Get more information from the trial website below.

REPAIR-MDS Trial Website

The REPAIR-MDS trial website which has regularly updated information about who to contact, trial eligibility criteria, trial sites and more.

REPAIR-MDS Central Management Team

MDS Patient Support

Dr Stephen Jenkins is Lead (Clinical) Chief Investigator on the REPAIR-MDS trial and consultant haematologist at Russells Hall Hospital, Dudley.

MDS Patient Support

Dr Manoj Raghavan is Deputy (Clinical) Chief Investigator on the REPAIR-MDS trial. He is a consultant haematologist based at the Centre for Clinical Haematology.

MDS Patient Support

Professor Janet Dunn is Co-Chief Investigator & Professor of clinical trials & head of cancer trials at - Warwick Clinical Trials Unit.

MDS Patient Support

Sophie Gasson is a PPI Research Fellow at Warwick Clinical Trials Unit.

A brief introduction to REPAIR-MDS from Co-Chief Investigator Dr Manoj Raghavan

Watch the recorded webinar on the REPAIR-MDS Clinical Trial from February 13th 2023

The AMMO Trial

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What is the AMMO trial?

MDS/MPN Overlap Syndromes are rare bone marrow cancers. They have features of both MDS (Myelodysplastic Syndromes - where too few healthy blood cells are produced) and MPNs (Myeloproliferative Neoplasms - where too many blood cells are produced).  One type of MDS/MPN Overlap Syndrome is CMML (Chronic Myelomonocytic Leukaemia). For most patients there are no effective treatments available. Patients experience bone marrow failure, leading to fatigue, infections and bleeding, with a damaging overgrowth of white blood cells. 

The AMMO trial will test a new drug called ASTX727 to see how effective it is at treating and extending/improving the lives of people with these diseases. The trial is a comparison of response to treatment of patients with MDS/MPN Overlap Syndromes, such as CMML, taking ASTX727 versus best supportive care.

 

 

MDS Patient Support
Chief Investigator - Dr Daniel Wiseman

 

Who can participate?

For MDS UK members, this trial is for people aged over 18 with a diagnosis of CMML-2, who have not received prior treatment with hypomethylating agents, such as Azacitidine. A more detailed list of inclusions and exclusions can be found on the AMMO trial summary.

Sites of the trial
  1. The Christie, Manchester-Open
  2. Churchill hospital, Oxford-Open
  3. Belfast City Hospital, Belfast-Open
  4. St James’s, Leeds-Open
  5. QE, Birmingham-Open
  6. Aberdeen Royal Infirmary, Aberdeen-Open
  7. King’s College Hospital, London-Open
  8. City Hospital, Nottingham-Open
  9. Southampton General Hospital, Southampton-Open
  10. University College London Hospitals (UCLH), London-Open
  11. University Hospital of Wales, Cardiff-Site in set up
  12. Beatson, Glasgow- Site in set up
  13. Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield- Site in set up

For more information about the trial

Follow the links to the resources below that will be regularly updated by the trial coordinators with information, details of who to contact and more.

AMMO Trial Website

The AMMO trial website has a very clear, plain English explanation of the background & aims of the trial, eligibility criteria, contact details and more.

Read more at the AMMO trial website

AMMO Trial Summary pdf

This guide has detailed medical information about the trial design, objectives, contact details and the main inclusion and exclusion criteria.

Download 'AMMO Trial Summary'

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