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We’ve got seven amazing people riding the Prudential Ride London for MDS UK

Posted on 21/06/2018 at 12:00 am.

MDS UK is delighted to announce that we've got seven amazing fundraisers taking part in this year’s Prudential Ride London, on Sunday 29th July 2018. This is one of the legacies of the 2012 London Olympic Games and will give us an opportunity to both raise awareness of MDS as well as a fantastic opportunity to raise money.

Prudential Ride London provides a fantastic platform to help fulfil The Mayor of London and Transport for London’s goal of encouraging more people to cycle more safely, more often. TfL anticipates tens of thousands of spectators and participants every year will take up regular cycling after each event. There is no other closed-road event like it that combines the fun and accessible element of a free family ride in central London with the excitement of watching the world’s best professional cyclists race.

Clare Fraser
I am an indoor cycling instructor and I have my own studio in Weybridge. I am also planning on doing an 8 hour spin-a -thon where people can come and join in on the hour for 1 hour at a time and donate money for my fund raising in payment for the class.

Peter Southey
I was told I needed to get fit and this seemed a good idea, well it did at the time, as I was helping a good cause as well as me. Cycling experience almost none.

Team Cashew and Ginger: Caitlin Limmer and Moni Lau
Caitlin: I have no riding experience, am doing it purely to raise money and awareness of MDS and make a big noise with my great, great friend Moni on the back. Clare Fraser is also a great mate of ours and she is a very good cyclist. All 3 of us have been in sport for years, but Moni and I are defo a liability on the bike - however we are going to try very hard!

Please Donate on Team Cashew and Ginger Virgin Money Giving Page!

Steve Richardson
My experience is that have been riding since my teens and now I am 67. I completed Ride London 2015 and 2016. I have been an MDS patient since 2011 but have been lucky to maintain my levels on EPO

Darren Laverty
I work with Russell and have known him for too long!! Around 30 years now. I have just started cycling but I always like to have a challenge to focus on and keep my fitness levels up and keep me out of the pub. I have seen Russell’s journey with MDS and cannot think of a better cause to raise a few pounds for.

Alex Myers
I'm a fairly regular cyclist, though have never done Ride London. I'm now mostly into triathlons, but last year did the Granfondo Stelvio in Italy which is a similar bike ride to this in distance. My father in law Don Barrett, who is Treasurer of MDS Patient Support, is very passionate about the work the charity is doing so I wanted to try and support with fundraising along with giving Ride London a go.

We would love more supporters to come on the day to be on the course and look out for our #TeamMDS. For details on the day, please email us to fundraising@mdspatientsupport.

MDS, Myelodysplastic Syndromes, are complex blood cancers. The impact of MDS on an individual’s quality of life can be dramatic and devastating. At the current time there is no cure for MDS other than a bone marrow transplant and even then as few as one in 10 patients will be fit enough to survive the rigours of treatment.

MDS Treatment: Prof. David Bowen talks about genetics, where we are now and where we’re heading

Posted on 05/04/2018 at 2:38 pm.

Written by Manuela Rotstein

"Personalised medicine means that you sit with an individual in front of you and you consider them as an individual, and you talk about their disease, their type of MDS in the context of their problems, their symptoms, so it's always been personalised. It's always been personalised in that you use your intuition, your experience and your judgement in the management of that patient."

"To practice good, proper precision medicine, you need the biological data, you need an idea of their quality of life, you need an idea of the diseases affecting that patient and you need an idea of that person's preferences. There are many factors now playing into the concept of personalised or precision medicine. The general view is that precision medicine is all about genomics, but it isn't..."

"Genomic medicine is very much the happening field of cancer biology at the moment, and MDS is no exception. In fact MDS has been leading the way"..."We can tell from a set of mutations that we analyse which MDS patient has which mutations; but there are many technical reasons why one mutation may be relevant, and the same gene mutated in another patient might not be causing the disease or might not be present in a high enough quantity to be sure that it's actually relevant."

"The more we know about this field, the more complex the analysis of the data becomes." "Whether every patient needs a genetic test for routine management is debatable, because there are relatively few drugs that we use that are actually able to target the mutations that we know are there. If we see mutation X, we use drug Y - we are not quite there yet."

"Research is always important. Without research we don't make progress. There is more of an acceptance today that large data sets from routinely treated patients are just as valuable as clinical trials that we do in parallel."

"We have a big registry programme here in Yorkshire and Humber where we are doing mutation analysis on all MDS patients, following over time, from a population of about 3,000,000 people... In the European Registry we are doing something similar. It is great if a patient can participate in this. All these initiatives are going to inform the way we treat patients in the future."

Jan Randall (nee Buchanan)

Posted on 15/02/2018 at 10:38 am.

Written by Manuela Rotstein

Jan was an energetic and determined businesswoman. She had an eye for detail and had quite a reputation for researching her topics. Recently, she had been a source of inspiration as part of our fundraising team and had been a supporter for a good few years.

Jan represented MDS UK at events in Parliament and took an active interest in MDS Patients. She was acutely aware that MDS was, and remains, a hidden illness, largely out of the public eye and was keen to raise awareness as a priority.

A great many people who have met Jan were struck by her positive attitude and desire to improve the lives of those around her. She was one of those people that you always wanted on your team to forge forward, where problems were just solutions in waiting.

Jan was an entertaining, engaging and confident individual who a great many people will miss and was taken from us far too soon.

She leaves a husband, Peter, for whom such a tragic and unexpected passing will leave a huge gap and we wish him our most sincere condolences and help where we can.

We hope that Jan will figure in everyone’s memories and her positive nature will live on.

MDS World Awareness Day 25th October – Flash Mob and more!

Posted on 25/10/2017 at 5:48 pm.

Written by mariano

The 10-mile race Cabbage Patch Race by Kate Carter The Running Blog:
One of my favourite autumn races took place yesterday - the Cabbage Patch 10 miler. I can’t say I did it much justice on very weary post-marathon legs, but as always it was a great run, through Twickenham, Ham and Richmond, along the river and past some rather bemused dog walkers and startling innocent bystanders.

True to form, the race was won in the sprightly times of 49min 42sec and 54min 46sec. Yes, for 10 miles. I missed the awards ceremony, which is a shame as the look on the winners faces (if they’ve not done it before) when they are presented with an actual cabbage is usually worth staying for. The prize money for this local race is very generous, and the times always impressive - one Mo Farah is a former winner - but my own particular congrats to my teammates Stephen and Nick, who both came in under an hour.

In addition, one of the runners, wrote a great blog mentioning MDS World Awareness Day!. She says:
Today, 25th October 2017, is Global MDS Awareness Day and it’s time to spread the word about this little known form of blood cancer. So, what is MDS, or Myelodysplastic Syndromes?

According to the MDS Alliance, MDS are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. Approximately 2,500 new cases of MDS are diagnosed in the UK every year but it is thought that many go unreported. Although most people who develop it are over the age of 65, it can strike at any time.

To mark MDS World Awareness Day, Caitlin Limmer, Patron of the MDS Patient Support Group charity, organised a ‘Flash Mob’ on a busy street in Twickenham (just down the road from Virgo’s Richmond office), whereby the Bearcats running club which she heads up (she’s one busy lady!) broke into a fabulous dance routine, all wearing their distinctive, red MDS t-shirts. This took place right after a popular local 10 mile race, the Cabbage Patch 10, so there was a good crowd of surprised athletes assembled to watch the action unfold. You can check out the video here.

Bravo, Caitlin and the Bearcats, we love your work!

Have you ever visited an MDS Specialist Centre?

Posted on 22/10/2017 at 8:11 am.

Written by Manuela Rotstein

Prof Bowen:
"For specialist opinions we have some patients that we would like to come back to the specialist centre and go back to their own hospital... We make sure that they don't duplicate efforts, and we make sure that there is a reasonable linkage to the other hospital and to our hospital. Younger patients that at some point could be considered for transplantation, who we perhaps see intermittently at the specialist centre, we test the bone marrow intermittently and we see the detailed results, that's one example. And there are others who come just to keep in touch with us, as well as receive their practical care at their hospital. As long as the written communication stream is good and the verbal communication is good between the medical staff and the specialists, that all works very well."

Prof Bowen explains how new treatments for MDS are developed and the importance of clinical trials

Posted on 10/10/2017 at 7:56 am.

Written by Manuela Rotstein

In the second video of this series, Professor David Bowen, Consultant Haematologist at St James University Hospital, Leeds, explains why clinical trials are key in the development of new treatments for MDS.

Prof Bowen is an honorary professor of Myeloid Leukemia Studies and Consultant Hematologist at St. James’s Institute of Oncology, Leeds, in the United Kingdom.

He is chief and co-investigator for several national MDS clinical trials and a member of the NICE Appraisal Committee evaluating cost-effectiveness of newly licensed drugs for potential use within the UK NHS. He also co-chairs the Steering Committee of the EUMDS Registry Trial.

We are honoured to have Prof Bowen as one of MDS UK Patient Support Group Scientific Advisors.

The MDS cheer team was at the Cabbage Patch on October 15!

Posted on 06/10/2017 at 8:49 am.

Written by Manuela Rotstein

Help improve the blood transfusion experience for MDS patients

Posted on 19/09/2017 at 5:28 pm.

Written by Manuela Rotstein

Depending on blood transfusion has a negative impact on the quality of life of MDS patients, but it is unavoidable for many patients.

That is the reason why a group of Canadian and United Kingdom haematologists are looking into running a series of studies to improve the red blood cell transfusion experience for MDS patients and improve their quality of life.

Before doing so, they are on a quest to understand better how red blood cell transfusions are being conducted today and ask patients what could be done, in their opinion, to make it better.

When is the right time to give a blood transfusion?

Posted on 06/09/2017 at 5:32 pm.

Written by Manuela Rotstein

When the blood lacks enough healthy red blood cells or haemoglobin, anemia symptoms develop, typically fatigue, shortness of breath, weight loss, paler than normal skin, etc and a blood transfusion is considered.

There is no set haemoglobin level at which a blood transfusion is given, but your doctor will assess your symptoms and you will decide together.

Prof. David Bowen says in a recent article:

I often delve back deep into the case notes to try to find a ‘normal’ haemoglobin level for that individual from many years before their diagnosis. I think that it helps to say to a patient for example ‘you are 30% down on your normal haemoglobin so it’s not surprising that you are feeling the effects’. This also helps us both to understand that the patient may have meaningful symptoms of anaemia despite their haemoglobin level being higher than that recommended for active treatment in the guidelines that we follow.

How often you have transfusions will vary between patients; some need transfusions every few months whilst others need one every every couple of weeks. Very often, once a patient has started having regular blood transfusions, the length of time between transfusions will gradually get shorter.
We asked Prof. Bowen if there is a limit on how often a patient could have blood transfusions. Prof. Bowen replied:

The simple answer is that there is no limit.
If blood transfusions are becoming considerably more frequent then the doctor needs to consider if there could be an explanation in addition to the MDS such as bleeding (usually internal) or the red blood cells being destroyed more quickly (haemolysis). These may be able to be treated and the transfusions will then reduce. However by far the most common situation is that the red blood cell production from the bone marrow gets poorer and poorer with time in some patients. We will transfuse as often as is needed to maintain acceptable quality of life and we often transfuse patients every 2 weeks and sometimes weekly. There is a move towards thinking about more frequent transfusions with fewer bags each time as this mimics the normal situation better without the big peaks and troughs of energy gain then energy deterioration.

With every unit of blood you receive from a transfusion, you will receive an excess amount of iron. Over time this can accumulate in your body and could possibly cause damage to certain organs, like your heart or liver.

There is still considerable uncertainty whether too much iron in your body is always harmful. The level of iron in your body should be checked regularly, especially when you are on a regular transfusion program and you may need treatment for the build-up of excess iron. This is called iron chelation. There is currently uncertainty about the benefits of removing iron. Whether you are offered iron chelation treatment or not will depend on the likely benefits versus the likely disadvantages in your
individual case. This will be discussed with you before you make a decision to start iron chelation.

Some patients will develop complications that could be related to iron overload such as heart failure, liver abnormalities and diabetes, but these complications have other causes in older age, and it is always difficult to be certain how much iron overload is responsible, and we have drugs that can effectively remove iron from the body.

“Patients condemned to die”: the campaign to make 2nd stem cell transplant available to all

Posted on 03/08/2017 at 4:19 pm.

Written by Manuela Rotstein

Anthony Nolan's Trust urged the Government to ensure every patient could access the treatment they needed and on the 24 February 2017 NHS England reinstated funding to 2nd stem cell transplants.

Stem cell transplants help cancer patients replace damaged blood cells
Procedure costs the National Health Service between £50,000 and £120,000
In 2016 the NHS banned second transplant if disease came back after first
Anthony Nolan Trust charity said: "22 transplant patients relapse each year"

In a joint letter to the Department of Health, Anthony Nolan Trust and some of leading names in British medicine rallied against the new guidance by the NHS.

‘Without a second transplant, the small percentage of patients considered suitable for one will die of their underlying disease,’ said Professor David Marks, former president of the British Society of Bone Marrow Transplantation and one of 18,000 signatories, including dozens of specialists in blood disease, to a letter handed to Health Secretary Jeremy Hunt.

The treatment, which offers the best chance of survival to these patients, was given routinely in the US and Europe, and Prof Marks, director of the Bristol Bone Marrow Transplant Unit, said: ‘I know of no other first-world country where people with a 30 per cent chance of a cure are denied a transplant.’

Before 2013, patients in the UK eligible for a second transplant received one, but in that year NHS England (NHSE) began evaluating whether repeat transplants should continue to be funded.

For the following three years, doctors had to submit individual funding requests. Some were turned down, and NHSE declared then that second transplants were ‘not currently affordable’.

Henny Braund, chief executive officer of British transplant charity the Anthony Nolan Trust, which co-ordinated the petition asked the public to write to their MPs, and said: ‘This is a step backwards for patients."

The cost of a transplant was lower than the cost of caring for a patient who was refused a transplant

A transplant costs between £50,000 and £120,000, but the cost of caring for one patient refused a transplant in those few years was £130,000 for the year they survived, and for another patient who survived three years it was £160,000.

‘Of those who do get a second transplant, one in three survive at least five years, and many are young people leading fulfilling lives and making a contribution to society. Denying those patients a chance of life amounts to a death sentence.’

One of those presenting the protest petition was acute myeloid leukaemia sufferer Emily Wellfare, who was told she would die if she did not get a second transplant.

She said: ‘My consultant at the Royal Marsden Hospital told me it would be the only thing that could save my life. 'He mentioned he would have to apply for funding, and it never occurred to me it could be refused.’

In February the 25-year-old from Eastbourne was given the shocking news that the application had been refused.

‘My doctors said the hospital was going to give me the transplant anyway. I am so grateful they fought so hard for me, but I want to know why the NHS thought my life wasn’t worth fighting for,’ added Emily.

She was in the second year of a law degree course when she started suffering from incessant coughs and colds in early 2012. In April that year she was diagnosed with acute myeloid leukaemia.

After chemotherapy, Emily spent a year in remission before discovering at her routine one-year check-up that her leukaemia had returned.

She was told she would need a transplant of stem cells – a procedure once called a bone-marrow transplant.

Cells, taken from a donor, grow in the bloodstream and make healthy blood cells to replace a patients’ own damaged ones.

Emily had her first transplant in February 2014, following three more rounds of chemotherapy.

After nearly two further years in remission, it was discovered at the end of last year that Emily’s cancer had returned again.

Since having her second transplant on March 14, Emily has been well but has to take steroids, antibacterial and anti-fungal drugs and immuno-suppressants.

Dr Jenny Byrne, honorary consultant haematologist at the city’s university hospital trust, said: ‘It was extremely disappointing and frustrating, given that we have plenty of patients in Nottingham who have had second transplants and are long-term survivors, fit and well and cured.’

Watch your animated guide to becoming a bone marrow donor. Steve Coogan narrates. Find out everything you ever wanted to know about a stem cell donation, from joining the register to what happens if you are a match.

Great News: MDS UK is taking part in this year’s Prudential Ride London

Here is our team of SUPER RIDERS!!!

Team Cashew and Ginger

Alex Myers

Email Us fundraising@mdspatientsupport

Latest News

"We've always practiced personalised medicine"

Should we start to insist that all MDS patients must have a genetic mutation test to establish what treatments may work out best for them?

What would be the research benefit of collecting tissue samples from all MDS patients? How can patients ensure this happens?

Learn more about the Registry Trial

Check other current clinical trials

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An inspired fundraiser, always positive and engaging

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AMAZING FLASH MOB IN TWICKENHAM TO RAISE AWARENESS OF MDS

CABBAGE PATCH RACE FOR MDS UK: NATIONWIDE COVERAGE!

MDS AWARENESS WALK ON THE 25TH

Latest News

Watch Prof Bowen Video on MDS Centres of Excellence

"Patients should have the opportunity to see a true expert in whatever disease they have"

Can a patient be seen at a MDS specialist centre as well as their local hospital?

Latest News

Watch Prof Bowen Video on MDS Clinical Trials

Cabbage Patch 10 is nearly upon us!

Share the Cabbage Patch Run details

Watch our flash mob video & learn the moves

Hurrah for our fundraisers!

More upcoming events for all abilities

How can blood transfusions be improved?

How can you help?

MDS Red Blood Cell Transfusion Survey

You are invited to participate in this online survey.

The Research Team

Take a look at current MDS clinical trials

Latest News

When is a blood transfusion considered? How low should the cell count be?

How often can a patient have a blood transfusion?

Blood transfusions lead to (temporary) improvements in a patient’s quality of life

The potential side effect of blood transfusions: Iron Overload

More information about transfusions on MDS UK

Free NHS App for Blood Transfusion Patients

My Transfusion is a new NHS-supported app created by SHOT (Serious Hazards of Transfusion) to help patients and carers better understand blood transfusions and feel more confident in their care.

The app includes:

Key information about blood transfusions

Alternatives to transfusion

Consent and preparation guidance

Safety checks and recognising reactions

Post-transfusion advice

Latest News

Anthony Nolan's Trust urged the Government to ensure every patient could access the treatment they needed and on the 24 February 2017 NHS England reinstated funding to 2nd stem cell transplants.

The cost of a transplant was lower than the cost of caring for a patient who was refused a transplant

Emily Wellfare's Story

Watch your animated guide to becoming a bone marrow donor. Steve Coogan narrates. Find out everything you ever wanted to know about a stem cell donation, from joining the register to what happens if you are a match.

How to be an Anthony Nolan bone marrow donor

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

Latest Patients' Stories