this must be archive.php

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

Written by

AMAZING FLASH MOB IN TWICKENHAM TO RAISE AWARENESS OF MDS

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!)

CABBAGE PATCH RACE FOR MDS UK: NATIONWIDE COVERAGE!

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!

MDS AWARENESS WALK ON THE 25TH

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!!

MDS Patient Support

MDS Patient Support

MDS Patient Support

Have you ever visited an MDS Specialist Centre?

Written by

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
Email: info@mdspatientsupport.org.uk

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

Written by

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!

Written by

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

Come & cheer

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

Join us
MDS Patient Support

Help improve the blood transfusion experience for MDS patients

Written by

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.

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.

MDS Patient Support

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

Current Trials

When is the right time to give a blood transfusion?

Written by

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.

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

Image of bags of blood in a tray in preparation for a blood transfusion

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.

 

More information about transfusions on MDS UK

Free NHS App for Blood Transfusion Patients

Illustration showing hands holding a mobile phone with the My Transfusion app on screen, with the text ‘Introducing My Transfusion’
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

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

Written by

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.’

Emily Wellfare's Story

MDS Patient Support

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.

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

Donate Stem Cells

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

Are you eligible?

The RIGHT treatment for the right patient at the right time – a crucial EU initiative

Written by

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:

You may also be interested in this recent interview with Prof David Bowen

Prof David Bowen Interview

More from MDS RIGHT

Would you like to run for us? Help patients by raising awareness & money for 3 patients meetings!

Written by

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.

"It's not just about raising money, it's raising awareness" Dan & Alec Holah

Russel Cook, Deputy Chairman and Head of Fundraising. He ran several marathons after his transplant for MDS

"More people will start to understand the illness"... "The charity is amazing" Olivia & Tilly Hepburn

"We will always want to work with the charity. I feel we need to keep that awareness going" Lisa Hepburn

Can Azacitidine be administered at home? The Spanish experience

Written by

A new project was trialled for more than two years by nurses from home-care units in Spain: 'Azacitidine (Vidaza) administration at home'.

Now it has been rolled out to include most of the hospitals in Spain administering Azacitidine. It was initially undertaken by nurses, not necessarily haematology nurses, who would visit patients at home usually by taxi from the hospital.

The economic savings were shown to be vast, saving around one-third compared to hospital administration. This equated to around 100.000 euros per year per patient.

See comparison below and download the full presentation here

Receiving Azacitidine at home increased patients' satisfaction

The patient videos and reports demonstrated clearly the increased level of patient satisfaction and improved quality of life for this patient group. Discussions around this included other units adopting the practice of caregivers trained to give Azacitidine at home once they had collected from the hospital on daily basis. This again showed a significant positive impact on patients who, for example, were already fatigued.

Learn more about Azacitidine (Vidaza)

What is Vidaza?
Free donations by shopping