Make Blood Cancer Visible 2018 coverage from Manchester

“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

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.


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.

Read More


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

Read More


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

Read More


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

Read More


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)

Read More


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)

Read More


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

Read More


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


Free donations by shopping