Further cuts for stem cell transplants – for yet another rare blood cancer

Telegraph article from Saturday 13th of August– with further details about NHS England funding issues.

Patients with WM (Waldenstroem) are denied live-saving stem cell transplant treatment

You may have read or heard about the recent legal case involving a HIV patient advocacy group, NHS England and local commissioning groups. The outcome has been that NHS England is being legally forced to fund a new anti HIV treatment called Prep. NHS England is intending to appeal against the court decision – as it claims that NHS England does not have the funds.

As a further step, NHS England has announced that, as a consequence, they have no choice but to stop funding several other treatments for different groups of patients. Amongst the disease groups affected by this funding cut are patients with WM (Waldenstroem - a rare blood cancer) who require a stem cell transplant.

In support of our colleagues with WM, the Blood Cancer Alliance has issued the strongest objection regarding the way this issue is being handled by NHS England.

The letter, signed by Bloodwise, MDS UK and Leukaemia Care among others, reads:

Dear Sir

We are dismayed with the announcement last week that due to the High Court ruling on the commissioning of PrEP, NHS England has announced that access to nine treatments for other diseases that had previously been approved for NHS use are now on hold.

The example of one treatment, stem cell transplantation for patients with rare blood cancer Waldenström’s Macroglobulinaemia (WM), is particularly stark. Transplants for WM patients have been carried out successfully on the NHS for the past 10 years, and with this option now being withheld indefinitely pending the High Court appeal, patients will not have access to this last chance for survival. The withholding of these treatments has led to huge uncertainty and confusion for patients and clinicians.

There appears to be no valid or transparent process for why access to these treatments has been suspended by NHS England. For WM patients, this comes after the removal of the treatment bortezomib from the Cancer Drugs Fund last year, one of several blood cancer indications delisted for NHS use during 2015.

In suspending access to these treatments due to the legal ruling, NHS England is pitting one population of patients against another, which is hugely unfair to patients on all sides.

We demand that NHS England reinstates access to these immediately, and a long term, sustainable solution is found so all patients can continue to access the treatments they need at a cost the NHS can afford.


Basil Skyers Myeloma Foundation


CLL Support Association

Leukaemia Care

Lymphoma Association


Waldenström’s Macroglobulinaemia UK

And more background about this topic in the recent Daily Mail article here

Blood vs Bone marrow: New technologies can reduce the need for bone marrow biopsies

Research FOR Patients
For an informed and empowered opinion
and an improved consultation
Have you made your clinical paper accessible yet?

Bone Marrow Biopsies: a less painful alternative for routine check-ups

Until now, bone marrow sampling has been the primary technique for routine follow-up checks on MDS patients after initial diagnosis. The bone marrow is the heart of the disease and reveals important clues, for example, about whether a patient is responding to therapy or whether the disease is stable or worsening (progression).

During the procedure, which can be uncomfortable, an aspiration from the patient's marrow is taken, and specific blood cells derived from the bone marrow are analysed, allowing clinicians to monitor the ongoing disease status of a patient.

More specifically, clinicians may look for the presence of particular genetic mutations within the cells, what the DNA chromosomes physically looks like (a technique broadly called cytogenetics) and the shape of certain bone marrow blood cells (morphology).

However, although necessary, bone marrow biopsies have many downsides. Most notably the stress and physical discomfort to the patient, for which some patients require sedation. It is an invasive procedure which therefore always carries a risk of infection. This risk also increases in elderly patients, or those with a low or very low neutrophil (white blood cell) count. This makes frequent sampling problematic which means patients may not be followed as closely as clinicians would like. Overall, for many patients, regular biopsies are yet another 'painful' and inconvenient aspect of living with MDS.

Peripheral Blood Sample: An alternative to biopsy


An easier alternative to a biopsy would be a peripheral blood (PB) sample (i.e. the blood already circulating in the body, which is produced in the bone marrow).

Until recently, it had not been conclusively shown in a large scale study that PB could be used to obtain similar results as a bone marrow biopsy. Also, the commonly used testing technique, called metaphase cytogenetics, does not work very well for PB samples. Therefore until now, there has been little momentum in adopting a PB sampling as standard practice.

However recent research by a group at Kings College London and the Hospital may change that (A M Mohamedali et al). Their research has demonstrated that peripheral blood samples are an equally accurate and reliable source for monitoring the genetic mutations in bone marrow derived blood cells, and hence for monitoring the disease status of a patient (please see below for full publication details).

The research group looked for the presence of various genetic abnormalities known to be frequently associated with MDS in both bone marrow samples and PB samples, and compared the results against each other.

In order to do this, they used two specific testing methods which do work for PB samples. The first is a technique called SNP – Array karyotyping (a method used to identify changes to the number of DNA strands in a cell, a feature commonly observed in MDS). The second technique used was next-generation sequencing technology (NGS) to look at over 20 genes known to harbour mutations in up to 80% of MDS patients. They found that if a gene mutation or changes to the number of DNA strands could be detected in a bone marrow biopsy sample, it could also be detected in the PB sample of the same patient. Overall, they found that the same results could be obtained for both bone marrow biopsy and PB samples using these techniques (there was a 98% concordance in results, which is extremely high).

These are very promising results which demonstrated proof of concept that PB can be used as a substitute for bone marrow biopsies. The authors of the publication recommend the use of PB for follow-up checks and believe that PB sampling has many distinct benefits over bone marrow sampling.

The most obvious being the fact that the method is less invasive and virtually pain free, with little or no risk of infection. This allows for more frequent check-ups which in turn enables closer disease monitoring for better outcomes. The procedure is also quicker and easier to perform than a biopsy, and as no sedation is required, patients are also able to leave immediately with no recovery time required.

Aside from patient benefits there are also important advantages for hospitals too. The procedure is easier and quicker to carry out than a bone marrow biopsy, therefore does not require specialist staff and cuts down on procedure time. In some cases it may even free up hospital bed time and offer cost savings.

Additionally, once the PB sample is taken, it can be analysed relatively easily using the two testing techniques described by the research group. Both the SNP – Array karyotyping and 21st century sequencing techniques were semi-automated, reliable and provided robust results, making it attractive for hospital diagnostic labs to implement.

Although a bone marrow biopsy will always be essential for initial diagnosis, finding easier, less painful, yet still accurate and reliable ways to monitor MDS patients represents a major improvement. PB sampling could spare a large population of patients the need for repeat bone marrow biopsies, making the burden of their disease a little lighter, and allowing clinicians to follow patients more closely through more regular checks.

MDS UK – Note to patients

If you are not yet offered the choice of peripheral blood (PB) sampling during routine check-ups and would like more information about its use, please contact MDS UK. This is a fairly recent technology, therefore if your haematologist has not yet started using it please hand a copy of this article to him/her. We would be happy to provide more information directly to you and/or your haematology consultant.

MDS UK – Note to haematologists

Further details about this technology can be found via: Research paper in Leukemia.

Please quote the following information if you wish to use our ResearchFORPatients article:

Source: www.mdspatientsupport.org.uk / ResearchFORpatients
Author: MDSUK/Stephanie Brett email: mds-uk@mds-foundation.org twitter: @mds_uk

Original reference paper:
A M Mohamedali, J Gaken, M Ahmed, F Malik, A E Smith, SBest, S Mian, T Gaymes, R Ireland, A G Kulasekararaj, G J Mufti, High concordance of genomic and cytogenetic aberrations between peripheral blood and bone marrow in myelodysplastic syndrome (MDS)
Leukemia. 2015 Sep;29(9):1928-38

Clinician and Researchers Quotes

This research has provided us with the very important information that the genetic abnormalities found in the bone marrow of MDS patients are also detected in the blood. We already know that many patients acquire new genetic abnormalities during disease progression and it would therefore be possible to monitor for this on a blood sample. At present the main limiting factors for adopting this approach are the cost of these technologies as well as the complexity of analysing the data produced. The price will however fall over time and we will continue to simplify the data analysis process meaning that this has real potential for the future management of MDS patients. Unfortunately I don’t think this will replace the need for a bone marrow biopsy as this remains critical in confirming disease progression however it may allow us to detect changes early and determine when this procedure should be performed. Further research will be needed to find out if this can improve the overall management and outcome in MDS patients.

Dr Catherine Cargo, Consultant in Clinical Haematology, Haematological Malignancy Diagnostic Service (HMDS), Leeds Teaching Hospitals NHS Trust

From a clinical perspective, this study is the first of its kind to demonstrate the potential use of 21st century technologies in improving the management and treatment of human diseases, especially in a disease like MDS where the majority of the patients are of old age (> 70 years). This study has clearly shown that the genetic analysis that is usually performed on bone marrow biopsy can also be reliably done on peripheral blood, thus potentially eliminating the need for repeated painful and expensive bone marrow aspirations for disease monitoring. That being said, further larger studies involving multiple centres are needed to verify these results before being introduced into routine clinical practice. Although there are challenges that need to be addressed including the cost and the data management as well as interpretation of the results, however, this technological advancement has great potential for the clinical management of MDS patients and will also help in early intervention where disease progression is suspected.

Syed Mian, PhD, Research Associate (one of the authors of this research paper) Department of Haemato-Oncology, King’s College London

Currently only a handful of specialist laboratories are equipped to perform SNP-Array karyotyping or next generation sequencing mutation analysis in MDS. The number of centres tends to be small because these types of analysis are highly specialised, require the use of expensive, dedicated equipment and require highly skilled and experienced staff. These laboratories tend to be within specialised Haematological Malignancy Diagnostic Centers such as the service in Leeds Teaching Hospitals NHS Trust and my laboratory within King’s College Hospital London. The cost of these investigations is relatively high, however the amount of genetic information obtained using these methods is much greater and results in improved certainty of diagnosis. Some of these genetic findings are also useful for informing clinicians and patients about the likely course of the disease and can also influence treatment options in a way that the conventional methods may not. Here at King’s College Hospital we have been performing this next generation sequencing mutation analysis and SNP-array karyotyping in MDS for several years. We have performed analysis on hundreds of samples and these analyses are now available as diagnostic tests. Access to these analyses make replacement of some bone marrow biopsy samples with blood a reality for our patients.

Nicholas Lea, PhD, Clinical Scientist, Laboratory for Molecular Haemato-Oncology, Department of Haematology, King’s College Hospital London

Our study was designed primarily with the patient benefit in mind. Being a tertiary referral centre for MDS, there was a clear need to improve on existing methods in aiding patient diagnosis and enable frequent follow up of patients. The data is an extension of our earlier publication in the journal Blood (2013) and confirms the very high concordance of the genetic information obtained from the bone marrow and peripheral blood. I am delighted that MDS UK has taken the initiative to disseminate this information to the community so that patients may benefit from cutting edge research tools to help and with their MDS journey

Dr Azim M Mohamedali, PhD Senior Research Fellow, Department of Haemato-Oncology, King’s College London

Patients condemned to die: NHS denies funding for 2nd stem cell transplant

Anthony Nolan's Trust urges the Government to ensure every patient can access the treatment they need


  • Stem cell transplants help cancer patients replace damaged blood cells
  • Procedure costs the National Health Service between £50,000 and £120,000 
  • But NHS decides to ban second transplant if disease comes back after first
  • Anthony Nolan Trust charity says 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 have rallied against the new guidance, issued this month.

‘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 last week to Health Secretary Jeremy Hunt.

The treatment, which offers the best chance of survival to these patients, is given routinely in the US and Europe, and Prof Marks, director of the Bristol Bone Marrow Transplant Unit, says: ‘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 past three years, doctors have had to submit individual funding requests. Some have been turned down, and NHSE has since declared second transplants ‘not currently affordable’.

Henny Braund, chief executive officer of British transplant charity the Anthony Nolan Trust, which co-ordinated the petition and is asking the public to write to their MPs, says: ‘This is a step backwards for patients.

A transplant costs between £50,000 and £120,000, but the cost of caring for one patient refused a transplant in the past 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.’

One of those presenting the protest petition last week was acute myeloid leukaemia sufferer Emily Wellfare, who was told in December 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.

Emily was luckier than another patient, a 21-year-old from Nottingham, who was rejected for a second transplant. 

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.’ 

A spokesman for NHS England said: ‘The procedure isn’t being funded this year because its low clinical benefit and high cost meant that it compared poorly with other new treatments which have been considered for funding this year.’

He added that individual funding requests would be considered where exceptional need and benefit could be provided, and the policy would be reconsidered in 2017.

However, Dr Byrne said: ‘It is not true to say that individual funding requests for transplants are getting consideration because they are routinely screened out by administrators who claim the cases are not sufficiently unique, and it is impossible to demonstrate the level of exceptionality that is called for.’

A Department of Health spokesperson said: ‘Funding decisions around treatments such as these are rightly for NHS England. We have referred the decision to them.’

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


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:  http://mdspatientsupport.org.uk/fund-raising-2/corporate-fundrasing/


Latest MDS research on the 57th Annual Meeting of the American Society of Haematology (ASH)

Dr Mike Dennis

by Dr Mike Dennis,  
Consultant Haematologist, The Christie, Manchester

The 57th meeting was held in Orlando, Florida (USA) in December 2015 and was attended by more than 20,000 professionals interested in blood disorders.  Here is a summary of Dr Mike Dennis report. Read the full report here.

Biology of MDS

An increasing number of specific gene mutations are being identified in patients with MDS.

An international collaboration of more than 3000 patients’ samples with MDS was presented by Rafael Bejar, Assistant Professor, University of California, San Diego (USA). This provided a wealth of further knowledge on the types of mutations that occur, their potential prognostic impact and potential therapeutic targets.

Lee presented work on spliceosomal mutations, demonstrating their importance in the generation of MDS and how they can be modulated by therapy, therefore creating a new therapeutic strategy for future clinical trials.

In the interim, there are relatively simple pathology tests (such as P53 staining) that can be very informative in clinical decision-making for clinicians.

Developments in MDS therapy

For me, the main themes explored from a therapeutic perspective were
1. Treatment options for low risk patients no longer responding to Erythropoiesis-Stimulating Agent (ESA). 

Luspatercept (previously known as ACE-536)  is a protein that causes a rise in haemoglobin in healthy volunteers.  Professor Aristoteles Giagounidis MD, Head of the Department of Oncology, Haematology and Palliative Care, Marien Hospital, Düsseldorf (Germany) presented results of a study in Germany where 58 patients with low risk MDS have been treated, if they’ve failed or are unlikely to respond to ESA. The majority went on to an extension study where the response rate was nearly 70%, with most responses being long lasting and the treatment well tolerated.  An international trial ‘MEDALIST’ is now being planned.

Other similar agents, such as Sotatercept (ACE-011), are also in clinical development.

2. Telomerase 

Most cancers have high levels of telomerase, including the more aggressive forms of MDS. Imetelstat is a strong inhibitor of telomerase which, in clinical trials for myelofibrosis, was found to have a high response rate in patients with specific mutations also common in MDS (SF3B1).

Aref Al-Kali MD (Assistant Professor of Medicine, Mayo Clinic, USA or Tel-Aviv Sourasky Medical Center, Israel) presented the initial findings of a trial in MDS patients with low risk disease, suggesting a good response rate with a reduction in transfusion requirements and good tolerability – again, there are trials planned with the agent in the UK in the near future.

3. Treatment options to improve the response rate with azacitidine 

There were a large number of studies looking at combination therapy with the current standard azacitidine to improve response rates and therefore survival whilst remaining well tolerated and preserving life quality for patients.

Eltrombopag (EPAG) is an oral medication which can stimulate platelet production. Professor Moshe Mittelman MD, Tel-Aviv Sourasky Medical Center, Tel-Aviv, Israel presented the findings of the ASPIRE study where EPAG was used in patients with advanced forms of MDS and low platelet counts, indicating it appears safe and well tolerated with some activity. Again, it was noted that it can stimulate neutrophil and red cell production. EPAG is currently undergoing trials in the UK in combination with azacitidine (ELASTIC trial).

4. Transplantation 

Randomised trials in stem cell transplantation are a rare event partly due to the complexity and the clinician experience with their approach to various clinical transplant situations. The MAvRIC trial was presented by Scott - 272 patients with MDS/AML who were transplanted across 32 transplant centres in the US.

The findings largely supported the already widely held belief that full intensity stem cell transplants are more toxic but have a lower relapse rate when compared to the more frequent approach of reduced intensity conditioning.


From a clinician’s perspective, patients with MDS are all too often a significant challenge with relatively few truly effective therapies available.

Our increasing understanding of the biology of the disease is creating more informed treatment decision-making and further therapeutic opportunities which can be explored. Progress in getting new treatments available for patients with MDS has, at times, been frustratingly slow and we are now looking at a future where further licensed therapies in MDS will not be far away.

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.

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.

MDS patients and carers attend parliamentary reception for Cancer52

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.

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:

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.

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.

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

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

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


"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

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

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:

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