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

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.

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?"

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

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.

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.

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.

More than 70 participants representing medical specialists and nurses caring for MDS patients, MDS patient advocates, medical researchers and data managers, healthcare authorities, regulators, HTA experts and industry representatives gathered for the first MDS-RIGHT multi-stakeholder meeting on the 3 May 2017 in Valencia, Spain - in conjunction with the biannual MDS 2017 International Symposium. 

This project is an essential and fantastic EU initiative – and we urge all dealing with Myelodysplastic Syndromes to keep abreast of news and developments.

Here are the main articles and reports:

• Multi-stakeholder meeting 'European Perspectives on MDS Patient Management' - meeting report
  You can download the PDF with a summary of all the talks here: 
• Improving MDS patient management in Europe - and what you can do right away
  How you and your hospital can participate and add to the MDS-Right project
• Can MDS experts review (and help) more patients please?

• MDS patients speak out - A patients’ perspectives
• Cost-effectiveness analysis: what is it and why is it important for clinical practice?
  This article is equally and increasingly important for patients – as access to future treatments depends on it – at a time where healthcare funding is in crisis

This year, our charity MDS UK was lucky enough to have 2 runners in the 2017 London Marathon Alec Holah, brother in law of Gavin Hepburn, who passed away a year ago, and Kirsty Crozier, an MDS Clinical Nurse Specialist in Oxford and Member of the MDS Committee.

We took this opportunity to conduct several interviews about the marathon, our charity and what it means to work closely with us.

We thank each one of our interviewees deeply for their kind, dedicated, thoughtful and generous input. They are wonderful friends, very close to our dear charity.