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A New Edition of the MDS Patient Handbook is out!

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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 new edition of the MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

At MDS UK, we felt there was an urgent need to revise the existing information material. We 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.

This booklet has been written by Dr Sally Killick, Consultant Haematologist; Dr Dominic Culligan, Consultant Haematologist; Philip Alexander, Counsellor and Cognitive Behaviour Psychotherapist; Geke Ong and Janet Hayden, Clinical Nurse Specialists; and peer reviewed by Professor David Bowen, Honorary Professor of Myeloid Leukaemia Studies and Consultant Haematologist, St James’s Institute of Oncology. The booklet has also been reviewed by patients and we are grateful to Chris Dugmore and Claudia Richards for their valuable contribution.

The booklet 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.

New Edition! Learn more about MDS with Our MDS Patient Handbook

Download the new booklet

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 is also available at all of our local group meetings.

Make Blood Cancer Visible 2018 coverage from Manchester

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“The Make Blood Cancer Visible campaign, this week was set up in Manchester From the 17th – 22th Sept

Make Blood Cancer Visible 2018 Installation

The pharmaceutical company Janssen has put together an amazing installation of transparent, motion-activated human figures which creatively represent the ‘unseen’ or invisible nature of blood cancer. The figures share real-life stories from people with blood cancer, in their own voices, encouraging passers-by to listen to their experiences and to show their support for the campaign.

Hear below the voices of real patients, taken from the audio on the exhibits:

Sandy: Blood cancer is very hard, I find it hard to describe both to myself and to my friends and family.

Carmen: I look okay to the outside world, but in the inside my body is trying to kill me. Just because I look good today and I feel fine doesn’t mean I'm okay.

Debbie: I avoided going to the doctors. I'd got the symptoms and I knew there was something wrong, I just put it off.

Claudia: Even now nine years later, the enormity of a very uncertain future can be quite overwhelming.

Debbie: I always thought I was a strong person anyway, but I think now I really know what strong is.

Carmen: And I think our bodies are really powerful. In some way they will find, if you're really lucky, a way of regenerating, so I'm really lucky that I'm in remission now.

Debbie: I discovered that the more I shared the better I felt.

Take a look at the many photos and reactions of the public to this exhibit – and read all about the launch of the campaign on the London

Photos from the Manchester Installation

[envira-gallery id="15517"]

We thank Janssen UK for sponsoring this work and making this awareness campaign possible. Without their help and organization, this type of work would not have been possible.

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Oral Azacitidine Plus Best Supportive Care

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*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

Read More

Sharon Berger Transplant Update

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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/

 

MDS patients and carers attend parliamentary reception for Cancer52

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On 20th April a group of seven MDS (Myelodysplastic Syndromes, a rare blood cancer) patients and carers went to Westminster and attended a parliamentary reception organised by Cancer52, a coalition of more than 80 charities representing rare and less common cancers. The reception was hosted and addressed by Chairman of the All-Party Parliamentary Group on Cancer (APPGC), John Baron MP.

MDS Patient Support

The purpose of the reception was to raise awareness of these cancers and highlight the need for earlier diagnosis.

Rare and less common cancers together account for more than half of all UK cancer deaths – more than the ‘big four’ (breast, prostate, lung and bowel cancer together) – and on average have poorer earlier diagnosis rates.

These seven patients and carers were invited because they are members of MDS UK Patient Support Group, one of the member charities of Cancer52:

MDS Patient Support

Prof Rodney Taylor is Chairman of MDS UK, an MDS patient himself, has experienced a number of MDS treatments (supportive care, transfusions, an MDS specific drug) over the course of 5-6 years. A year ago, when he stopped responding to a life extending drug azacitidine, he had to resort to a stem cell transplant at age 71. His wife and carer, Dr Janet Taylor accompanied him. They met with their MP Dr Tania Mathias.

Reverend Kes Grant, was diagnosed with MDS 16 years ago, at age 35. Following a gradual but serious deterioration of her health and quality of life, she too is now facing the prospect of a stem cell transplant. A treatment she is not looking forward to, as outcomes vary greatly and carry a good deal of uncertainty. Kes recently had to give up her work as a school chaplain, due to MDS, despite trying very hard to still work part-time. This has been devastating for her. Kes attended with her partner and carer Maggie Buckley. They met with their MP Matthew Pennycock.

MDS Patient Support

Leanne Tilbrook, a very young MDS patients (typical age at diagnosis is 71yrs old), needs a transplant soon. She attended with her father Steve Tilbrook – who has been supporting MDS UK for a long time.
Neil Harrap very sadly lost his wife Julie to MDS two years ago, following complications of her stem cell transplant. He has now vowed to help raise awareness of the disease with MDS UK.

MDS UK members and their MP’s were briefed on the number of people diagnosed with rare and less common cancers in their area.

MDS Patient Support
MDS Patient Support

Jane Lyons, CEO of Cancer52, said, “It was fantastic to see so many people affected by rare and less common cancers at the reception raising awareness of these diseases with their MPs. For many the speed of diagnosis is critical as rare and less common cancers are more likely than the common cancers to be diagnosed late, often in A&E, and this has an impact on one year survival rates."

Rodney Taylor said, “It was a pleasure to join Cancer52 at their reception and discuss such an important issue. We need to be doing far better at diagnosing, referring and treating cancers earlier, particularly rare and less common cancers. Access to innovative treatments need to be much improved too.”

Dr Tania Mathias MP said “A privilege to meet patient-expert and constituent Prof Taylor: excellent action points concerning rare cancers.”

Useful links:
For more information about MDS UK please visit www.mdspatientsupport.org.uk
For more information about Cancer52 please visit: http://www.cancer52.org.uk/.

The All-Party Parliamentary Group on Cancer is the voice of the cancer community in Parliament, raising cancer at every opportunity, including on the Floor of the House and in meetings with Ministers and others.
The Cancer Strategy (Achieving world-class cancer outcomes: a strategy for England 2015-2020) was published in July 2015

MDS Patient Support

Nurses’ Day – 12 May 2016 – Kes Grant’s Thank You

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Nurses Day

Nurses’ Day takes place on 12th of May each year, on the anniversary of Florence Nightingale’s birth.

It’s a chance to celebrate the remarkable difference nursing staff around the world make every day. It’s also a time for patients to thank nursing staff for their dedication and care.

This year we've taken the opportunity to thank all fantastic haematology nurses and CNS's through our Facebook page. Patients also shared their story and say thank you for the support the nurses provide, often in very difficult circumstances, on the Royal College of Nurses website. One of these moving stories was Kes's.

Kes Grants's Thank You

MDS Patient Support

 

"16 years ago I was diagnosed with a rare blood cancer called Myelodysplastic Syndrome or MDS. MDS is incredibly debilitating – I live in almost constant pain, and part of the disease causes my joints to swell up and my hair to fall out."

"Despite the challenges I face every day, I still feel inspired to talk about my MDS, to share experiences with newly diagnosed patients and to let them know that life is worth living.

"Part of the reason for this is my Clinical Nurse Specialist (CNS), Geke. She has been a rock from the very beginning.

"Three times a year we visit a patient support group at King’s College Hospital in London. At times we deliver talks together on coping with fatigue and the demands of a fluctuating condition.

"I hope our unique double act encourages others to seek help, and in particular the support of a CNS, because Geke is truly my safety net.

"While MDS affects me every day, I know the nature of the condition makes Geke’s job difficult too. Patients get very poorly and die but Geke still invests her time and energy to make every single person feel special.

"I know there are challenges ahead for me. I’m losing my mobility and with it, my independence, and I’ll need a transplant soon. But no matter what MDS throws at me, I know Geke will be there to reassure me.

"My message to Geke this Nurses’ Day can be summed up in a single quote:

"What we have done for ourselves dies with us.

What we have done for others and the world remains and is immortal."

 

You can still share your story and say Thank You to your haematology nurse ‪#‎thankanurse‬ on our Facebook page!

Apply to review Cancer Research UK research centres

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Cancer Research UK are recruiting a patient panel to review their research centres and you can apply to be a member.

Cancer Research UK funds 18 experimental cancer medicine centres and gives support to 15 more research centres across the UK. These centres are essential to beating cancer sooner.

All of these centres will apply for five years funding. The applications are going to be reviewed by an expert committee. But they also want people affected by cancer to provide feedback on the centres, so they are creating a Patient Panel.

If you apply to be in the Patient Panel:

  • You will review applications and send your comments
  • You will be attending a Patient Panel meeting in London.
  • You will be discussing and scoring each application together with the other members of the Panel.

Do you have a keen interest in research?
Are you willing to read information to develop your understanding the work of Cancer Research UK and the four UK Health Departments?
If you are please apply to take part in the panel.

To apply please email involvement@cancer.org.uk to request an application form and return it before 17th June 2016

Read the full article here.

 

Understanding Mutations to Treat MDS

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The most dramatic development in MDS research over the past few years has been the identification of the gene mutations that cause MDS. These mutations are not inherited, but are acquired in blood stem cells during the lifespan of a person.

Benjamin Ebert is researching these mutations. A major focus of his research is to determine how this genetic information can be used to improve the diagnosis of MDS, and to find the best therapy for each MDS patient.

Lenalidomide, for instance, is a powerful treatment for MDS patients with deletions of Chromosome 5q, a specific genetic mutation.

In the future the research could predict response to azacitidine and decitabine, only available in trials in Europe, and it might help to find out who is best suited for a transplant.

Some of these findings are only preliminary, and Ebert and his team are working to study larger groups of patients to make definitive predictions.

Not a cure but a lot of progress - all of the time, thanks to national and international researchers, and many clinical trials.

Read the full article here:
http://www.lls.org/blog/understanding-mutations-to-treat-mds

Take Part In This Survey And Help To Create Better Tools For Patients

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Thanks to the latest improvements in cancer treatment many more cancer patients are now able to live with their condition.

As a chronic illness, cancer requires long-term watch, maintenance and treatment and patients and their families need to manage their own care.

The iManageCancer project is creating intelligent, fun new ways to allow patients to manage their lives from their mobile phones.

Now they are asking for your help.

This month, they have launched a survey aimed at healthcare professionals, patients and the general public to find out what they'd like to see if they used a personal health record online.

The survey is available to take by clicking here

Everyone can take part, and the more, the better; whether you are comfortable with technology, or not so much.

The results will help to create better tools to help people with cancer, so please to share this with everyone you know!

 

Asda

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ASDA Public vote and donation scheme

September 2014ASDA-web003
We are pleased to announce that we have received the runners-up prize in the ASDA donation scheme – in the ASDA store of the Old Kent Road. This is the local store to King’s College Hospital.
We thank staff member Claire Gager, Community Life Champion for delivering the cheque for £50 to our offices.
All ASDA stores run this same scheme – and we encourage all our patients and family members to request their local ASDA stores to enter MDS UK as one of their charities. It is the same token system as Waitrose.
In this scheme, 3 charities can enter each month. Winners receive £200 and runners up £50 each.
Thank you to ASDA and all their customers for their votes.