Lenalidomide in MDS Patients with Del 5q

  1. SUB-TYPE OF MDS: Del 5q
  2. SEVERITY OF MDS: Low or Intermediate
  3. NAME OF DRUG: Lenalidomide
  4. Aims and benefits: This trial will investigate how lenalidomide, Revlimid®, affects the disease progression of patients with transfusion dependent MDS. This is a registry, non-interventional study.

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Telesto Trial – Chelation Therapy

*CLOSED TO RECRUITMENT*

  1. SUB-TYPE OF MDS: All
  2. SEVERITY OF MDS: Low, or low to moderate
  3. NAME OF DRUG: Deferasirox
  4. Aims and benefits: This trial investigates how exactly chelation therapy can affect the health of patients with MDS and iron overload

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Oral Azacitidine Plus Best Supportive Care

*SUSPENDED*

  1. SUB-TYPE OF MDS: Those who need red blood cell transfusions
  2. SEVERITY OF MDS: Low
  3. NAME OF DRUG: Oral Azacitidine
  4. Aims and benefits: To investigate the efficacy and safety of Oral Azacitidine + Best Supportive Care VERSUS Placebo + Best Supportive Care

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Decitabine in MDS after Azacitidine Failure

*CLOSED TO RECRUITMENT*

  1. SUB-TYPE OF MDS: MDS with 5% or more marrow blasts or chronic myelomonocytic leukemia (CMML-2); or AML with 20-30% bone marrow blasts
  2. SEVERITY OF MDS: Intermediate 2 or High Risk
  3. NAME OF DRUG: Decitabine
  4. Aims and benefits: This trial investigates whether Decitabine has a good response rate in MDS patients who failed therapy with Azacitidine

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Deferasirox + EPO study

*CLOSED TO RECRUITMENT*

  1. SUB-TYPE OF MDS: All.
  2. SEVERITY OF MDS: Low to Intermediate 1
  3. NAME OF DRUG: Deferasirox and Erythropoietin (EPO)
  4. Aims and benefits: This trial will assess the impact on hemoglobin, platelets and neutrophil, and iron levels in patients treated with Deferasirox combined with Erythropoietin (compared to Erythropoietin alone)

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Rigosertib Intravenous – INSPIRE

  1. SUB-TYPE OF MDS: All.
  2. SEVERITY OF MDS: All.
  3. NAME OF DRUG: Rigosertib
  4. Aims and benefits: This trial will investigate the survival of MDS patients receiving intravenous Rigosertib after failure of treatment with a Hypomethylating agent (HMA), Azacitidine (aza) or Decitabine (DEC)

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Eltrombopag for MDS patients

  1. SUB-TYPE OF MDS: MDS patients who are platelet transfusion dependent
  2. SEVERITY OF MDS: intermediate 1 & 2 or high risk
  3. NAME OF DRUG: Eltrombopag, Promacta™/Revolade™
  4. Aims and benefits: Study will assess the proportion of patients who are platelet transfusion free during the first four cycles of treatment

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Sharon Berger Transplant Update

Sharon Berger, who celebrated her 65th birthday only a few weeks ago, has received devastating news when a routine blood test showed that, after three years, her leukemia has returned.

Sharon needs now a new stem cell donor. A suitable donor will most likely be someone with Ashkenazi Jewish heritage, so Anthony Nolan is calling for donors from this community:

Read more about Sharon Berger's patient story on Anthony Nolan's website.

Sign up to become a stem cell donor and you could be a lifesaving match for someone with blood cancer.

4th May 2013

Wonderful news - a donor was finally found for Sharon Berger who has been waiting since December for a transplant.
We wish Sharon all the best with the transplant ahead and hope she will recover from it as quickly as possible.

sharon pic2

Her family and Anthony Nolan have done amazing work on getting more people from Jewish origin to register to donate stem cells.

Thanks to all of the people who have participated in raising awareness about this - and especially to those who registered.

Jonni - her son added:
"Very pleased to have reached a major turning point in our #Spit4Mum campaign as a good stem cell match has been identified & Mum is scheduled to have the transplant in a couple of weeks, all being well. Still a long road but a massive thank you to everyone who has helped get us to here, couldn't have done it without you.

We also thank Anthony Nolan and Delete Blood Cancer for their amazing tireless work and support.
And we wish Sharon all the best with the transplant ahead now."

Anthony Nolan posted the news on their website - saying:
"The Bergers’ campaign had a huge impact on the number of people joining the bone marrow register. The campaign has so far attracted 1,191 Jewish people to join Anthony Nolan’s donor register, compared to 107 in the same period in 2012.

‘We are so grateful for every single person who has joined the register as a result of our campaign and all those who have helped in other ways. There are still people who are waiting for a match and we want more people who have been inspired by our story to join the bone marrow register.’

Ann O’Leary, Head of Register Development at Anthony Nolan, says, ‘We are absolutely delighted that Sharon has found a suitable bone marrow donor and we wish her all the best with her transplant. The ‘spit4mum’ campaign has attracted a record number of Jewish people to join Anthony Nolan’s bone marrow register. This will help us to find suitable donors for more blood cancer patients in the future. This is one of the biggest patient appeals we have had and will have a huge impact on the register in terms of the number of potential Jewish donors.’

The Jewish News - Online 2 May 2013-page-001

Further news were published in the Jewish Chronicle - as well as the blog in Jewish mother

http://thejewishmother.co.uk/a-match-has-been-found-for-spit4mum/

As a reminder: There are 2 donor registration charities which the Bergers have been working with and you can contact them to receive a kit in the post which will enable you to join the register, full details regarding eligibility etc on their websites:

If you are under 31, you can #Spit4Mum with Anthony Nolan (http://www.anthonynolan.org/Spit)

If you are 31-55 you can #Swab4Mum with Delete Blood Cancer (http://is.gd/Swab4Mum)

Her son Jonni also connected with the Waitrose branch of Brent Cross to start one of their Community Matters donation scheme.
More details on our Fundraising page:  https://mdspatientsupport.org.uk/fund-raising-2/corporate-fundrasing/

 


Print out the New MDS Patient Handbook

Being diagnosed with myelodysplastic syndrome (MDS) can be a shock, particularly when you may never have heard of it.

MDS UK has now produced a brand new MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

It has been written to help you understand more about MDS. It describes what they are, how they are diagnosed and treated and also the expected outcome (prognosis). It also provides information on coping with the emotional impact of an MDS diagnosis.

Whilst the covers are different, the content is the same.
All 3 organisations will work together to ensure this booklet is available in all hospitals.

Learn more about MDS with Our MDS Patient Handbook

Our Patient Handbook, has been written to help you understand more about MDS. Did you find the booklet helpful ? Please let us know by answering this QUESTIONNAIRE

At MDS UK, we felt there was an urgent need to revise and replace the existing information material.
We also wanted to ensure that as many patients as possible would benefit from this in-depth booklet, and hence asked those two great organisations to join us in this project. It is highly necessary and beneficial to all patient groups to work together whenever possible, and save valuable funds that way.

We sincerely thank:
- our colleagues – Leukaemia Care and Bloodwise
- the contributing authors for the different chapters – Dr Sally Killick, Dr Dominic Culligan, Philip Alexander, nurses Janet Hayden and Geke Ong
- our peer reviewer – Prof David Bowen
- the patient reviewers Chris Dugmore and Claudia Richards

If you wish to obtain a copy of the booklet please click here or contact us by email or telephone:
admin1@mdspatientsupport.org.uk or 020 7337558

A stock of booklets will also be available at all of our local group meetings.

Once you've read it, please let us know your thoughts by filling in this short survey


Oxford and Thames Valley Regional Group

Oxford and Thames Valley Local MDS Group

Support, Information, Awareness & Campaigns for those affected by Myelodysplastic Syndromes

This group meets every 3 months on Friday mornings between 10.30 am and 12.30 pm. Led by Advanced Nurse Practitioner Kirsty Crozier and assisted by patients Claudia Richards and Gwyneth Brown-Lowe.
Contact: For more information and dates of meetings, please email oxfordgroup@mdspatientsupport.org.ukc

Location:
Maggie’s Oxford Centre
Churchill Hospital
Old Road
Oxford, OX3 7LE
Find it in this Map

Email:
Oxfordgroup@mdspatientsupport.org.uk

Come and share your questions and experience

Friends and family members are also invited

What do people say about this local group?

Are you unsure whether to attend the meetings? See what other people are gaining from taking part!

Anna

I felt very alone when I first received my diagnosis. The meetings have helped me learn more about MDS and meet others with the same condition but different experiences.

Rob

My introduction to the Oxford Support Group was prevaricated. I had seen posters within the Churchill Hospital, had pledged to go, but had then missed the dates. I already attended "Maggies" Oxford and was benefitting from being with other cancer survivors.

Having joined MDS UK I finally met with the Oxford Support Group and was able to be with others who also had been diagnosed with the same condition as myself, albeit with many variations. I had found the illness a somewhat lonely experience and the sharing was a great counterbalance.

Claudia, the group co-ordinator, brought to the meeting news and views from afar, and, at later meetings, Kirsty, the specialist nurse and a mine of information, was able to answer members’ questions in a full and easy to understand manner.

There are exciting plans for the next meeting and, as usual, I am looking forward to it.

John

I have had Non-Hodgkins Lymphoma for 17 Years and in March 2017 I was told by my Haematologist that it had developed into MDS. Although I received a good explanation medically, I was still very unsure about future treatments. I attended the Maggie Centre at the Churchill Hospital in May 2017, and heard about the MDS Patient Support Group. Maggie’s is a lovely building and has a very relaxing, non-clinical feel. On 23 June my wife and I attended the MDS group's bi-monthly meeting. We were able to discuss MDS and its treatment with 12 other patients. Everyone there has a different form of MDS or were at different stages of treatment. It gave my wife and myself great confidence in the future and we gained loads of knowledge.

We also had a presentation by an advanced nurse practitioner, who explained the various blood readings and their implications. This was extremely useful for the future. Our next meeting is on 29 September at the John Radcliffe where latest developments in MDS research will be explained and we will be able to tour the Haematology Lab. We look forward to it and meeting with fellow patients again.

Robin

I joined the Group when it was first formed, or shortly afterwards, by one of the Research Nurses working with Prof Vyas. In those days, we met in one of the lecture rooms at the Churchill Hospital. I don't remember very much about the early meetings: I hadn't been diagnosed with MDS very long, but had been referred to the Churchill and was on a clinical trial.

After a time we had to move out of the lecture rooms and start using a portacabin, with an occasional social get-together in a pub! For various reasons, the numbers attending the meetings dwindled and we struggled to remain in existence. But we did, thanks to Claudia, who had taken on the role of co-ordinator. During this time, we could see some building work in progress, which was most intriguing as there was no indication of its purpose. However, it turned out to be a Maggie Centre and this became the new home for our meetings!
At these meetings we are able to talk to each other about MDS and our treatment experiences – as most of us have a different Syndrome - and support one other in a sympathetic way. Maggie’s provides very comfortable meeting rooms and the volunteer staff are all very welcoming, greatly contributing to making our meetings a pleasant and helpful experience.

The group is very much revitalised and membership has increased thanks to Claudia's efforts, and to Kirsty, our very knowledgeable clinical lead and her informative talks. Kirsty is also able to arrange for members of the Churchill's staff to talk to us on subjects of interest. Particularly interesting will be the upcoming visit to the Research Lab.

Claudia

Claudia

Gwyneth

Kirsty Crozier

If you would be willing to act as a point of contact at your local hospital (for instance, taking in posters/leaflets, being a contact for any MDS patients who have not previously come to the Support Group meetings), please let us know. Gwyneth and Claudia also welcome any suggestions for future meeting topics/speakers and for any other type of event (Coffee Morning, Fundraiser etc.) which you feel the Group should consider.

MDS UK Patients Forum

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