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

Sophie Wintrich, Chief Executive of the MDS UK Patient Support Group, interviewed Prof. David Bowen – Consultant Haematologist at St James University Hospital, Leeds. Watch the video and read the excerpts below.

"We've always practiced personalised medicine"

"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..."

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?

"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."

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

"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."

Learn more about the Registry Trial

Check other current clinical trials


More Good News: The Cabbage Patch 10 Mile Race

We have 20 running places at the Cabbage Patch 10 Mile Race!

MDS UK is delighted to announce that we have secured 20 running places in this year’s Cabbage Patch 10 mile race thanks to our wonderful supporter and Patron, Caitlin Limmer.

We have a place for you

The race takes place on 14th October 2018 and previous winners have included none other than Mo Farah!

If you would like an opportunity to help MDS UK raise funds to support patients with myelodysplastic syndromes - rare forms of blood cancer - then email us in the first instance fundraising@mdspatientsupport.org.uk .

All we ask is that you commit to raising £100 for MDS UK and use the Virgin Money Giving website to do this.

Get to know more about this amazing event The Cabbage Patch 10 Mile Race Official Website


Cycle the Prudential Ride London for MDS UK!

Great News: We have spaces available to participate in this year’s Prudential Ride London!

MDS UK is delighted to announce that we have spaces available to participate 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 the issue of MDS as well as a fantastic opportunity to raise money.

Prudential Ride London

Prudential Ride London

Entry Deadline is 17:00 on Friday 25 May 2018

Prudential Ride London provides a fantastic platform to help fulfill 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. This will be achieved by creating massive engagement with participants, spectators and media alike.

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!

We are offering FIVE places to committed individuals who would want to help us raise funds for MDS UK. They will be joining two other cyclists who already have places – Moni Lau and one of our Patrons, Caitlin Limmer.

Not only are we hoping to field a reasonably sized team on the day to participate but we are also hoping that we can provide support from volunteers on the day to be on the course and look out for our #TeamMDS.

MDS, or 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.

Cycling places for this event are in huge demand and will be on a first-come first-served basis. For details of the places available please email us in the first instance to fundraising@mdspatientsupport.


Volunteer With Us

Could you help us to help you?

We are looking for enthusiastic new volunteers to help with various aspects of our expanding patient services.

Anything from Admin to Zen meditation, anywhere from Land's End to John O'Groats.

MDS Volunteers Raising Hands

Volunteer with us

Interested? Please send us details of any skills you think you can bring, your contact details and a little about yourself.

Write to us

MDS UK Patient Support Group,
Haematology – Bessemer Wing, King’s College Hospital,
Denmark Hill, London SE5 9RS

MDS Volunteers Call

Make a real difference in your spare time

Our volunteers are the heart of MDS UK Patient Support Group. Without them, we would not be able to continue to provide information and support to MDS Patients and their families.

Our volunteers have a range of experiences: some have MDS and are patients themselves, some have supported a friend or family member, others have professional or personal skills that can support our activities. Many of our volunteer roles can be undertaken in your own home.

As a volunteer you could be involved in any of these activities or others:

Why Volunteering?
The top two reasons for volunteering are that volunteers 'find it rewarding to know they are helping others', and 'they enjoy volunteering as they themselves benefited from our services and so they enjoy giving something back'.


Vidaza / Azacitidine: Learn all about this drug

Are Vidaza and Azacitidine the same drug? Why does it have two names?

Vidaza and Azacitidine are the same drug

Azacitidine is the official generic and non-proprietary name given to the drug active ingredient while Vidaza is its trade name.

The drug is widely available in the UK for the treatment of MDS since its approval in February 2011 by NICE - the National Institute for Health and Clinical Excellence (NICE). MDS UK Patient Support Group was in consultation with NICE during the approval process and campaigned for the approval of drug.

Is Azacitidine (Vidaza) a chemotherapy?

Azacitidine is a chemotherapy drug, however, it is a "hypomethylating agent". 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.

How does Azacitidine work?

Azacitidine 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.

It is recommended as a treatment option for adults who are not eligible for stem cell transplantation and have intermediate-2 and high-risk myelodysplastic syndromes according to the International Prognostic Scoring System (IPSS) (See more at Nice Website).

How is Azacitidine administered?

You usually have azacitidine as an injection just under your skin (subcutaneously) given by a doctor or nurse. This can be in your upper arm, leg, buttock or stomach. You usually have it as an outpatient.

You usually have azacitidine as a course of several cycles of treatment.

You have treatment each day for a week and then 3 weeks with no treatment. This makes up a treatment cycle. You usually have at least 6 cycles and the treatment continues for as long as it is working.

You can also have it every day, for 5 days. Then have 2 days off and have azacitidine again for 2 days at the start of the next week.

The Treatment Involves Several Courses

The Treatment with Vidaza/Azacitidine Involves Several Courses

Azacitidine (Vidaza): Latest research

Azacitidine is an important drug for the treatment of MDS but 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 Vidaza/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 Vidaza/Azacitidine 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


Jan Buchanan

It is with huge sadness that we announce the passing of Jan Buchanan.

Jan had very recently stepped down from the committee of MDS UK Patient Support Group.

Regrettably, shortly after, and just before Christmas, she suffered a brain haemorrhage from which she did not recover.

Jan Buchanan

An inspired fundraiser, always positive and engaging

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.


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

LIVING WITH MDS

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.
CLICK ON THE IMAGE TO DOWNLOAD


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

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 :
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!!


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
Email: mds-uk@mds-foundation.org


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