Living with MDS: Top Tips to Improve Your Quality of Life


Having MDS will have impact on your daily life. Each person will cope in their own unique way.

Not everything in this gallery will apply to you, but there might be feelings that you are familiar with. It is hard to directly "change an emotion", while thoughts and behaviours are more easily changed.

We hope you try some of these tips, those that suit you best. They can help you to gain back control. The way we think affects the way we feel.

(Click on the images for more information)

MDS UK Patient Support Group Newsletter – December 2017

Our seventh edition of the MDS UK Newsletter is now out!

Read all about:
MDS UK new Patron Caitlin Limmer AKA “The Force of the Limmer” and “Force of the Limmer”, the Race Director of Twickenham’s famous Cabbage Patch 10 Race and The Turks Head 10k.
A campaign that was worth it: NHS England will fund 2nd stem cell transplants for patients whose blood cancer relapses.
New developments in MDS Treatment, Advice on Travel and Insurance and much more.

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


To celebrate MDS World Awareness Day a cheerful bunch from the Bearcat Running Club  stormed the Cabbage Patch Pub in Twickenham and started dancing to the tune of Gloria Gaynor "I am what I am"!! WATCH THE VIDEO:

Such was the impact that people were reported to donate spontaneously after the dance, without even been asked!
Our member and Oxford Group Coordinator, Claudia Richards, says in our Facebook group page:

Always wear your MDS UK T-shirt with pride - you never know when someone will give you an unexpected donation (as happened to me as I walked up Twickenham High Street after the Cabbage Patch 10 yesterday!)


The 10-mile race Cabbage Patch Race by :
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!


On the 25th of October, our tireless patron Caitlin Limmer, took more people - and a dog - on a leisurely MDS Awareness walk.

Another fabulous event, that we mean to turn into an MDS AWARENESS tradition!!

Have you ever visited an MDS Specialist Centre?

Watch Prof Bowen Video on MDS Centres of Excellence

In the third in a series, Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds - talks with Sophie Wintrich about what seeking an MDS specialist opinion can do for a patient and how MDS Centres of Excellence work together with local hospitals. Watch the video and read the excerpts below.

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

Prof Bowen:
"What an expert can offer is a detailed review of the patient, taking into account the specific context of that MDS patient, the advances in the biology of the disease, the experience of that MDS expert who would have seen a lot of patients over the years, and imparting much more information to the patient than is conceivable in the local hospital, simply because there is no time for detailed conversations (in the local hospital)"

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

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."

If you would like more information and advice about MDS, contact us at:

Postal Address:
MDS UK Patient Support Group
King's College Hospital
Haematology - Bessemer Wing
Denmark Hill
London SE5 9NU, UK
Telephone: 020 7733 7558

What is CAR-T cell therapy? Learn how this immunotherapy works in blood cancer

Car-t cell therapy aims to boost the immune system to attack tumor cells

Cell therapies, sometimes called “living therapies", are an especially promising and rapidly growing area of cancer research.

One approach that’s been pioneered by Memorial Sloan Kettering researchers, led by investigator Michel Sadelain, is called CAR-T cell immunotherapy. This type of targeted immunotherapy aims to boost the immune system by giving immune cells the information they need to better recognize tumor cells as foreign and attack them.

How does Car-t therapy work in blood cancer?

The technique involves filtering white blood cells called T cells from a patient’s blood and introducing a new gene into those cells. A disabled virus called a vector is used to carry this new gene inside the T cells and insert it into the cells’ genomes.

The gene programs the T cells to make a chimeric antigen receptor (CAR), which enables them to recognize a specific protein that’s present in cancer cells. These CAR-T cells are then grown in the laboratory and infused back into the patient, where they seek out and destroy the cancer.

CAR T cell therapy is currently being evaluated in the clinic at MSK for certain types of leukemia and lymphoma.

In this approach, T cells are genetically engineered to recognize a protein called CD19, which is found on the surface of blood cells called B cells.

In the largest study reported so far, for adult patients with B cell acute lymphoblastic leukemia — a rapidly progressing form of blood cancer — a report published by MSK researchers last year found that 88 percent of patients responded to the therapy.

In late 2014, the US Food and Drug Administration granted MSK Breakthrough Therapy Designation for its CD19 CAR therapy. In August 2017 the FDA approved a Novartis Car-t therapy, called Kymriah (tisagenlecleucel), for children and adults up to age 25 with B cell who have not responded to conventional therapy or who have relapsed. In October 2017 it approved Yescarta (Axicabtagene Ciloleucel), another cell-based gene therapy, to treat adult patients with certain types of large B-cell lymphoma who have not responded to or who have relapsed after at least two other kinds of treatment. Yescarta, a CAR-T cell therapy, was the second gene therapy approved by the FDA.

The science behind it

  • A chimeric antigen receptor (CAR) helps T cells identify tumors.
  • These T cells then recognize blood cancer cells as foreign and attack them.
  • CAR T cell therapy is being used to treat leukemia and other cancers.

Learn More:
Science: Aug. 30, 2017
Modified T cells that attack leukemia become first gene therapy approved in the United States
FDA: Oct. 17, 2017
FDA approves CAR-T cell therapy to treat adults with certain types of large B-cell lymphoma

Take a look at current MDS clinical trials

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

Watch Prof Bowen Video on MDS Clinical Trials

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.

Read More

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

Cabbage Patch 10 is nearly upon us!

We are getting together for the Cabbage Patch 10 mile run on the 15th October to support our runners and shout out about MDS in the run-up to MDS World Awareness Day.

Join us on the 15th of October to raise awareness and fundraise for MDS.

Or why not having a go at dancing for a repeat of our legendary flashmob following Gloria Gaynor's inspiring tune "I am what I am?"

Share the Cabbage Patch Run details

Watch our flash mob video & learn the moves

Hurrah for our fundraisers!

We have an amazing team of 15 runners fundraising for us. Click on their names to sponsor their efforts on their Virgin Money Giving Pages:
Darren Laverty
Daniel Holah
Sarah Mayo
Nicky Morgan
Lisa Hepburn
Alec Holah
Alicia Madgwick
Hayley Saunders
Gareth Clifton
Simon Gardiner
Mark Read
Chris Fawcett
Mike Leigh
Russell Cook
Rowland Phillips

More upcoming events for all abilities

Azacitidine (Vidaza): Learn more about the latest developments around this important drug

What is Azacitidine (Vidaza) and how does it work?

Azacitidine is a type of drug called a hypomethylating agent. It works at the DNA level, "switching on" genes that stop the cancer cells growing and dividing. This reduces the number of abnormal blood cells and helps to control cell growth.

Hypomethylating agents are considered a non-intensive treatment. They are aimed at slowing the progression of the disease with as few side effects as possible, maintaining a good quality of life. They will not cure MDS but may ‘modify’ it and are usually given as an outpatient.

The Treatment with Azacitidine Involves Several Courses

Azacitidine (Vidaza): Latest research

However, not all patients will respond to the treatment. Some will progress to leukaemia, others won't have an adequate response in terms of their blood count.

At the 14TH INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES, that took place in Valencia in May 2017, one of the topics discussed was the latest research around this important drug. Read more about how researchers are trying to establish which patients will have a good outcome with Azacitidine and whether the use of Azacitidine together with other drugs can make the treatment more effective.

Learn more about the latest MDS research: Download the full MDS Symposium Patient Summary

Predicting Good Outcomes with Azacitidine Treatment

Researchers are exploring which factors might be useful for predicting a good outcome in patients with MDS.

Certain treatment decisions for patients with MDS are based on cytogenetics, i.e. the study of the chromosomes. Azacitidine is appropriate for patients with higher risk MDS who often have mutations in chromosome 7 or three or more abnormalities in their chromosomes.

Dr. Raphael Itzykson, Université Paris Diderot, France, presented a study showing that if the platelet count after one cycle of the drug doubles, this is a good sign for an overall success of the treatment. However this happens in only a small proportion of patients.

Several ongoing efforts, including the HARMONY study, have a good chance of identifying more factors that predict azacitidine outcomes in MDS and other blood cancers and of predicting the effects of treatment on the patient's quality of life, healthcare costs, and care strategies.

The Best Partner for AZA in Higher-Risk MDS

Dr. Mikkael Sekeres (Cleveland Clinic, Ohio) focused his presentation on combinations of Azacitidine and other drugs for higher-risk MDS.

The combination of azacitidine and vorinostat seemed promising. In a phase II clinical trial, about 70% of patients with untreated higher-risk MDS, CMML, or AML responded to the treatment, which was about double the expected rate for azacitidine alone. These responses lasted an average of 16 months.

Similarly, response rates and duration of response were promising in a phase I-II clinical trial of the combination of lenalidomide and azacitidine for higher-risk MDS.

Dr. Fenaux added that studies are also evaluating combinations of azacitidine with other treatments, such as valproic acid, venetoclax, immune checkpoint inhibitors, and idarubicin for higher-risk MDS or CMML.

Establishing The Correct Dose

Other research is assessing more intensive hypomethylating treatments or lower doses for longer use. Studies are testing different drugs, including venetoclax, cenersen, and a 10-day decitabine cycle (another hypomethylating agent) for MDS with TP53 mutations.

Dr. Sekeres concluded that azacitidine alone is still the standard treatment for higher-risk MDS. But some evidence
hints at better and more long-lasting responses for combination treatments if patients stay on them long enough. The hypomethylating drug “partners” under investigation might become options for higher-risk MDS in some patients.

Clinical Trials open to recruitment in the UK

Help improve the blood transfusion experience for MDS patients

How can blood transfusions be improved?

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.

How can you help?

If you are a Myelodysplastic Syndromes (MDS) patient, you live in the US, the UK or Canada and you've been receiving at least one unit of red blood cells every eight weeks for the last 4 month period, the research team would like to hear from you.

MDS Red Blood Cell Transfusion Survey

You are invited to participate in this online survey.

The online survey will take approximately 5-10 minutes. Your responses will be kept strictly confidential. Be reassured that they will not collect any information that will personally identify you.

Your participation in the study is voluntary, i.e. you may choose not to participate at all and you may exit the survey at any time.

The Research Team

Rena Buckstein MD FRCPC Associate Professor, University of Toronto, Department of Medicine, Division of Hematology/Oncology
Yulia Lin MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Jeannie Callum MD FRCPC Associate Professor, University of Toronto, Department of Laboratory Medicine and Pathobiology
Simon Stanworth MD Consultant Hematologist, NHS Blood and Transplant, Oxford University Hospitals NHS Trust

Take a look at current MDS clinical trials

When is the right time to give a blood transfusion?

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

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.

Why does anemia develop in MDS? Watch the video

How often can a patient have a blood transfusion?

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.

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

The potential side effect of blood transfusions: Iron Overload

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.

Says Prof Bowen.

Read Prof David Bowen full article in MDS EUROPE: "Which patients need more blood transfusions to improve quality of life and can we identify the patients who need iron chelation more precisely?"

Learn More About MDS Treatments

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