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Make Blood Cancer Visible 2018 coverage from Manchester
Written by sophie
“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
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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.
Make Blood Cancer Visible 2018 coverage from Wales
Written by Manuela Rotstein
The Make Blood Cancer Visible campaign: was set up in Cardiff during the week of 10 – 15 Sept, in Working Street.
Take a look at the many photos and reactions of the public to this exhibit – and read all about the campaign on the London launch page
BBC Wales evening news Make Blood Cancer Visible 2018
Interview with Donna and Dr Ceri Bygrave, including footage of the installation and the campaign film
Interview with Donna talking about her daughter Emily, the Make Blood Cancer Visible campaign and the installation
Remembering Emily: Recapturing the joy a teenager brought into the world before she died
Emily Clark was determined to help other cancer patients before her death. Read the full article on Wales Online.
Western Mail: "We had no idea of the impact Emily had on other people"
The legacy of cancer blogger Emily Clark continues to inspire others more than two and a half years after her death. Mark Smith caught up with her mother and sister.
Wales Installation Photos
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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.
Take Part in Make Blood Cancer Visible 2018 this September
Written by Manuela Rotstein
For a better understanding and perception of blood cancer
Throughout September #BloodCancerAwarenessMonth, we will tweeting bite-size MDS Facts and results from our MDS UK survey, which assessed the status and needs of 171 MDS patients in the UK.
The month-long campaign is called Make Blood Cancer Visible. We are working with colleagues of all Blood Cancer Charities: Anthony Nolan, Bloodwise, CLL Support Association, CML Support, Leukaemia Care, Lymphoma Action, Myeloma UK, and Waldenstrom's Macroglobulinemia (WMUK), with the support of Janssen UK.
Blood cancer is the third biggest cancer killer in the UK, claiming the lives of more than 15,000 people each year – more than breast cancer or prostate cancer. We believe that making blood cancer more visible will help people identify symptoms earlier, strengthen the community of people affected by blood cancer and help us to fund lifesaving research.
Help us raise awareness with the general public this September by sharing MDS Facts and MDS Patient Stories.
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.
Over the course of September, the installation will travel to four locations, starting in London on 4 September. It will then move onto Cardiff, Manchester and Edinburgh. The dates and locations are as follows:
Westfield Stratford, London 4 – 8 Sept
Working Street, Cardiff 10 – 15 Sept
Piccadilly Gardens, Manchester 17 – 22 Sept
Waverley Mall, Edinburgh 24 – 29 Sept
MDS UK team was present on the day representing all MDS UK patients
Our Oxford Group coordinator, Claudia Richards, was chosen to feature in the exhibit and share her experience of living with MDS. Last year she also took part in the installation and presented a section on the 2017 Make Blood Cancer Visible event. Here is a video of Claudia telling her emotional journey after diagnosis.
Listen to Claudia explaining what was one of the first challenges she faced when she was diagnosed with MDS:
At the installation we met Ally Boyle MBE, who campaigns with us, and we are immensely grateful for the work he is doing. Also present were our dear staff members Raqeebah and Mike, and our CEO, Sophie.
MDS patients and carers talk about their MDS experience and the Make Blood Cancer Visible campaign
We spoke to some of our brilliant MDS patients and carers and here is what they said about their MDS experience and the Make Blood Cancer Visible campaign.
"Increased awareness and education is vital as the more people who know the signs, the more people will be able to recognise something is wrong" - Ally Boyle MBE
"Being involved with the support group gave me another identity other than being a MDS patient and stopped me from worrying about my disease as I was contributing to something important" - Claudia Richards
"Most of the time I look perfectly normal and it is a hidden problem. You have to manage your life to stay well" - Ian
"The installation will hopefully raise awareness of MDS.״ Talking about your diagnosis with other patients and being in contact with the support group is quite good as I get to learn from other people's experiences and also about the disease" - Prue
"It is a comfort to meet other patients and to see how they are living a normal life and being positive for the future" - Paul
"I look completely healthy and normal however my blood counts don't reflect this. MDS is a silent and hidden disease" - Dennis
"It is helpful to come here to talk to other MDS patients and carers" - Maureen
"Don't panic when you get the diagnosis, just keep going and be positive" - David
"My husband David has MDS and I give him his weekly injections. He seems perfectly fine just a bit tired although it is hard to keep him down" - Patricia
"Get on with your life and live it to the full" - John
MDS Symptoms Before Diagnosis
More images of the fantastic MDS Representation on the day
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DAME KELLY HOLMES GIVES HER SUPPORT TO #MakeBloodCancerVisible
Dame Kelly Holmes is the official ambassador for Make Blood Cancer Visible 2018.
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.
September Blood Cancer Awareness Month
Written by Manuela Rotstein
Make Blood Cancer Visible
September is Blood Cancer Awareness Month.
Last year, in 2017, the event was marked with many other blood cancer charities, with an extraordinary art installation in London, named “Make Blood Cancer Visible” – which featured the names of 104 blood cancer patients in red letter statues – and exhibited in central London. 104 statues – to remind people that 104 people are diagnosed with a form of blood cancer every day.
On that occasion our own Trustee and Oxford Group Coordinator Claudia Richards was chosen to present a section on the day. She said then:
I have clear memories from my adolescent years of adults around me talking about cancer in hushed tones, with the term itself not even being voiced. We have thankfully moved on from that in the last 50 years! During that time, awareness raising campaigns have allowed us to inform ourselves about the visible signs and symptoms of, for instance, meningitis, stroke or heart attack. We are also gradually breaking down barriers to talking about mental health issues. So maybe it’s high time we did the same for invisible diseases, and particularly blood cancers which account for one-third of all cancer deaths.
In the minds of the general public at least, the term “cancer” is predominantly associated with solid tumours, and specifically the four most common forms. As far as blood cancer goes, while most people may have heard of leukaemia, for instance, they are unlikely to be aware of the symptoms, let alone be familiar with terminology such as “chronic”, “acute”, “myeloid” or “lymphatic”. That is, until they – or someone dear to them – receives that diagnosis. And as clinicians are clear about the fact that early diagnosis is key to a positive outcome, raising the profile of blood cancer and its symptoms is key to ensuring that more people seek medical advice at an early stage.
Blood cancer, rare or otherwise, needs to be made visible, and we can all help to make it so. We may not all have the artistic vision of a light installation in Paternoster Square, but we can wear a lapel badge, share information on social media, raise funds for a patient support group or blood cancer charity, talk to our MP about the importance of the APPG on Blood Cancer and ensure our GP receives information material on blood cancer symptoms and diagnosis.
Make Blood Cancer Visible Installation in Central London
MDS UK members were also there raising awareness
Several MDS UK members were covered in the event – and had their statues displayed. Some even chose to keep their statues!
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Tina at Make Blood Cancer Visible
Blossom & her story at the Installation
Claudia's display at Make Blood Cancer Visible
The 2017 Campaign
The 2017 Campaign was covered in the media – and many MDS patients attended the launch, and the subsequent exhibition, which lasted a month.
This event was sponsored by the pharmaceutical company Janssen, to raise the need for more awareness of blood cancers – and was covered widely in the press.
Dr Martin Wermke explains how iron overload can affect the outcome of stem cell transplant
Written by Manuela Rotstein
Dr Martin Wermke, Haematologist, University Hospital Dresden, Germany, explains the impact of iron overload in the blood in allogeneic stem cell transplant – and how that information can guide therapeutic interventions.
Iron Overload: A Patient Story
Bergit Kuhle's experience with Chelation Therapy
EPO (Erythropoietin) & other Erythropoiesis Stimulating Agents (ESAs) in the Treatment of MDS
Written by Manuela Rotstein
In this article Dr Chris Dalley, Consultant Haematologist University Hospital Southampton (NHS Foundation Trust), looks at the use of conventional and new Erythropoiesis Stimulating Agents (ESAs) in the treatment of MDS.
What are Erythropoiesis Stimulating Agents (ESAs)?
Erythropoiesis (from Greek 'erythro' meaning "red" and 'poiesis' meaning "to make") is the process which produces red blood cells.
More than two thirds of patients with Myelodysplastic Syndromes (MDS) are anaemic at the time of diagnosis and about the same proportion of patients are known to have lower-risk disease as defined by the International Prognostic Scoring System criteria1 (IPSS).
Anaemia is a significant burden to many patients with MDS. It may impair a person’s ability to perform normal tasks due to exhaustion or fatigue and may exacerbate coexisting medical conditions like heart disease or respiratory conditions. Measures taken to optimise or improve haemoglobin levels are vitally important, particularly in patients with low-risk MDS who may have to live with the anaemia for many years.
Red cell transfusions remain the most frequent way in which anaemia is managed in patients with MDS. Although safe, regular transfusions may cause iron overload which may then need to be controlled. Also, regular red cell transfusions schedules are time consuming and carry the inconvenience and burden of travel to and fro from the hospital for the patient.
Erythropoieis stimulating agents (ESAs) are therapeutic drugs that improve haemoglobin levels. They have the potential to reduce the frequency or the need for red cell transfusions and may improve or maintain a patient’s quality of life.
Clinical guideline groups have defined the role of these agents in the management of MDS including those published by the British Society of Haematology, the European LeukemiaNet and the National Comprehensive Cancer Network. Recent clinical trials have highlighted the effectiveness and safety of new ESAs and this article will highlight the salient points relating to the use of conventional and novel ESAs in the setting of MDS.
How do Erythropoiesis Stimulating Agents work?
1. Erythropoietin (EPO)
Erythropoietin (EPO) is a naturally occurring hormone produced by specific cells in the kidneys in response to low levels of oxygen in the blood. It plays a vital role in promoting and controlling red cell the production (erythropoiesis) by the bone marrow.
Pharmaceutical companies have manufactured recombinant EPO (rEPO) including erythropoietin-alpha, erythropoietin-beta and Darbopoietin using DNA technology since the late 1980s. When rEPO is administered by a simple injection under the skin (subcutaneous injection) it leads to an increase in haemoglobin levels which may result in therapeutic benefit to the patient.
Since the 1990s clinical trials demonstrated that rEPO can be safely used to improve haemoglobin levels in patients with low-risk MDS. Numerous clinical research groups have confirmed the clinical efficacy of rEPO in patients with low- risk MDS. Better responses to rEPO have been reported in patients with baseline EPO levels of less than 200U/L, and a MDS diagnosis other than refractory anaemia with ring sideroblasts (RARS)2.
Other factors influence response to rEPO in patients with MDS. These include shorter time from MDS diagnosis to treatment, a low transfusion requirement prior to commencing rEPO treatment and a low risk disease defined as IPSS low and intermediate-1, and fixed dosing of rEPO3.
2. Erythropoietin and granulocyte colony-stimulating factor
Granulocyte colony-stimulating factor (G-CSF) is a growth protein that stimulates the production of neutrophils (a type of white blood cell) in the bone marrow. Like rEPO, it is manufactured using DNA technology and has to be administered as a subcutaneous injection.
A number of clinical studies have demonstrated that rEPO and G-CSF work together to improve haemoglobin levels in patients with MDS, with response rates of approximately 50%! The combination may be particularly beneficial in patients with RARS, or patients who fail to respond, or have only a temporary response to rEPO alone.
How will my haematologist decide if I need an ESA?
Patients with low-risk MDS (IPSS low or intermediate 1, IPSS-R very low, low or intermediate) with symptoms of anaemia with haemoglobin level of less than 100g/L may be candidates for ESA therapy.
A validated predictive score which takes into account monthly red cell transfusion requirement, and baseline serum EPO levels of patients before starting an ESA treatment can be used to establish if a patient is likely to respond to ESA therapy7.
Haematologists use this metric to aid their decision making. Patients with predictive scores of 0 to 1.0 have a relatively high chance of responding to ESAs (predictive responses of 74% and 23% respectively) and should be offered rEPO if they are anaemic. However, patients with a score of 2.0 generally have a relatively low chance of responding to ESA (less than 10%), and rEPO is generally not recommended for patients with this predictive score.
What is the optimal dosis of erythropoiesis stimulating agents for each patient?
Typically, patients with low-risk MDS with the exception of RARS (refractory anaemia with ring sideroblasts) should initially start rEPO at 30,000 units/week but lower doses may be recommended in patients with impaired kidney function.
If a response is not achieved after 8 weeks the dose should be increased to 30,000 units twice weekly or 60,000 units/week for a further 8 weeks.
For patients treated with Darbopoietin the starting dose should be 150 micrograms/week or 300 micrograms every 2 weeks. The dose can be increased after 8 weeks in non-responding patients to 300 micrograms/week.
Patients with RARS, and patients who fail to respond to single agent rEPO should be considered for rEPO and G-CSF. The typical starting dose of G-CSF in this setting is 300 micrograms once weekly with the aim of increasing the neutrophils count to no more than 6 to 10x109/L. Doses of G-CSF should generally not exceed 300 micrograms three times per week.
How will my haematologist assess my response to erythropoiesis stimulating agents?
Patients receiving ESA should have their response to erythropoiesis stimulating agents assessed after a maximum period of 4 months of therapy. Clinical responses are usually assessed by documenting improvement in haemoglobin levels, and or reduction in red cell transfusion requirement. Defined criteria for response include:
I. Partial response
- In red-cell transfusion dependent patients: Stable anaemia without need for transfusions.
- In patients with stable anaemia: Increase in haemoglobin of at least 15g/L but haemoglobin less than 115g/L.
II. Complete response
1. Stable haemoglobin of at least 115g/L and transfusion independence.
Patients who achieve a sustained complete response may have their ESA dose slowly tapered down by their treating haematologist to the lowest dose that sustains the response.
Patients who lose their response to ESA may require reassessment of their MDS disease status with a bone marrow biopsy, full blood count and blood film examination in order to exclude the possibility of progression of their disease.
New Erythropoiesis Stimulating Agents
Luspatercept and Sotatercept
Luspatercept and its analogue Sotatercept are two new ESAs. Both drugs are manufactured using DNA technology, and like rEPO they have to be administered by subcutaneous injection.
However, they both work in a distinctly different way to rEPO and both drugs promote late-stage red cell production in the bone marrow by binding to proteins from the transforming growth factor β family.
Promising efficacy and safety data from phase 2 clinical trials has recently reported and both drugs appear to be particularly effective in patients with RARS, MDS with SF3B1 mutation or both. In the PACE-MDS trial, patients with low-risk MDS and anaemia, (with or without the need for red cell transfusion) received Luspatercept at various doses every 3 weeks. Although the total number of patients in the study was relatively small, 63% of 51 patients who received Luspatercept at higher doses experienced improvement in their haemoglobin and 38% of 42 patients achieved transfusion independence as measured by trial criteria9. A randomised placebo-controlled phase 3 multicentre clinical trial to determine the safety and efficacy of Luspatercept was initiated in 2016 and is ongoing.
In a recent phase 2 study Sotatercept was administered to 74 patients with low-risk MDS who were red cell transfusion dependent. Patients recruited to the study had either lost response, had no response, or were predicted to have low chance of response to EPO. The investigators reported improvement in haemoglobin in nearly 50% of patients, and responses were sustained without the need for red cell transfusion for at least 56 days in 7 out of 12 patients (58%) with low transfusion requirements.
In Sum:
- Anaemia is the central clinical problem for patients with low- risk MDS.
- Red cell transfusions play a central role in managing anaemia, but ESAs also play an important role and national and international MDS clinical guideline groups have defined when ESAs should be used in patients with low-risk MDS.
- In general, only patients predicted to have a high chance of responding to an ESA should be prescribed rEPO, either as single drug, or in combination with G-CSF11.
- Haematologists may change the dose of ESA depending on a patient’s response to treatment, aiming at maintaining the lowest possible dose of rEPO in those patients to achieve a complete response.
- There are data to suggest that an early start with ESA may delay the need regular red cell transfusion and improve quality of life.
- A low response may require an increase in ESA dose
- Patients who lose a response to their ESA may need to have their MDS reevaluated because loss of response may be due to progression of their MDS.
- Luspatercept and Sotatercept are new ESAs that work in a different way to rEPO to increase red cell production.
- Both drugs have been investigated in clinical trials and have been shown to improve haemoglobin levels in patients with low-risk MDS, with relatively few adverse effects.
- These new ESAs have not yet found their way onto MDS guidelines
- More extensive clinical outcome trial data is required before we can understand their true clinical utility in MDS anaemia.
- However, in the future a more extensive repertoire of ESAs will hopefully be available to clinical haematologists and their patients.
References
1. Greenberg P, Cox C, LeBeau MM, Fenaux P, Morel P, Sanz G, Sanz M, Vallespi T, Hamblin T, Oscier D, Ohyashiki K. International scoring system for evaluating prognosis in myelodysplastic syndromes. Blood. 1997 Mar 15;89(6):2079-88.
2. Hellström-Lindberg E. Efficacy of erythropoietin in the myelodysplastic syndromes: a meta-analysis of 205 patients from 17 studies. British journal of haematology. 1995 Jan 1;89(1):67-71.
3. Moyo V, Lefebvre P, Duh MS, Yektashenas B, Mundle S. Erythropoiesis-stimulating agents in the treatment of anemia in myelodysplastic syndromes: a meta-analysis. Annals of hematology. 2008 Jul 1;87(7):527-36.
4. Park S, Grabar S, Kelaidi C, Beyne-Rauzy O, Picard F, Bardet V, Coiteux V, Leroux G, Lepelley P, Daniel MT, Cheze S. Predictive factors of response and survival in myelodysplastic syndrome treated with erythropoietin and G-CSF: the GFM experience. Blood. 2008 Jan 15;111(2):574-82.
5. Negrin RS, Stein R, Doherty K, Cornwell J, Vardiman J, Krantz S, Greenberg PL. Maintenance treatment of the anemia of myelodysplastic syndromes with recombinant human granulocyte colony-stimulating factor and erythropoietin: evidence for in vivo synergy. Blood. 1996 May 15;87(10):4076- 81.
6. Hellström-Lindberg E, Ahlgren T, Beguin Y, Carlsson M, Carneskog J, Dahl IM, Dybedal I, Grimfors G, Kanter-Lewensohn L, Linder O, Luthman M. Treatment of anemia in myelodysplastic syndromes with granulocyte colony-stimulating factor plus erythropoietin: results from a randomized phase II study and long-term follow-up of 71 patients. Blood. 1998 Jul 1;92(1):68-75.
7. Greenberg PL, Sun Z, Miller KB, Bennett JM, Tallman MS, Dewald G, Paietta E, Van Der Jagt R, Houston J, Thomas ML, Cella D. Treatment of myelodysplastic syndrome patients with erythropoietin with or without granulocyte colony-stimulating factor: results of a prospective randomized phase 3 trial by the Eastern Cooperative Oncology Group (E1996). Blood. 2009 Sep 17;114(12):2393-400.
8. Hellström-Lindberg E, Gulbrandsen N, Lindberg G, Ahlgren T, Dahl IM, Dybedal I, Grimfors G, Hesse-Sundin E, Hjorth M, Kanter-Lewensohn L, Linder O. A validated decision model for treating the anaemia of myelodysplastic syndromes with erythropoietin+ granulocyte colony-stimulating factor: significant effects on quality of life. British journal of haematology. 2003 Mar;120(6):1037-46.
9. Platzbecker U, Germing U, Götze KS, Kiewe P, Mayer K, Chromik J, Radsak M, Wolff T, Zhang X, Laadem A, Sherman ML. Luspatercept for the treatment of anaemia in patients with lower-risk myelodysplastic syndromes (PACE-MDS): a multicentre, open-label phase 2 dose-finding study with long-term extension study. The Lancet Oncology. 2017 Oct 1;18(10):1338-47.
10. Komrokji R, Garcia-Manero G, Ades L, Prebet T, Steensma DP, Jurcic JG, Sekeres MA, Berdeja J, Savona MR, Beyne-Rauzy O, Stamatoullas A. Sotatercept with long-term extension for the treatment of anaemia in patients with lower-risk myelodysplastic syndromes: a phase 2, dose-ranging trial. The Lancet Haematology. 2018 Jan 10.
11. Killick SB, Carter C, Culligan D, Dalley C, Das‐Gupta E, Drummond M, Enright H, Jones GL, Kell J, Mills J, Mufti G. Guidelines for the diagnosis and management of adult myelodysplastic syndromes. British Journal of Haematology. 2014 Feb;164(4):503-25.
12. Garelius HK, Johnston WT, Smith AG, Park S, de Swart L, Fenaux P, Symeonidis A, Sanz G, Čermák J, Stauder R, Malcovati L. Erythropoiesis-stimulating agents significantly delay the onset of a regular transfusion need in nontransfused patients with lower-risk myelodysplastic syndrome. Journal of internal medicine. 2017 Mar 1;281(3):284-99.
MDS UK May 2018 Newsletter
This article was first published in the 8th Edition of the MDS UK Newsletter. If you haven't received it, please contact us.
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Erythropoiesis Stimulating Agents and other Growth Factors in Low-risk MDS
The Basics: Understanding Blood Formation: Blood Cells & Blood Structure
We’ve got seven amazing people riding the Prudential Ride London for MDS UK
Written by Manuela Rotstein
Great News: MDS UK is taking part in this year’s Prudential Ride London
MDS UK is delighted to announce that we've got seven amazing fundraisers taking part 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 MDS as well as a fantastic opportunity to raise money.
Prudential Ride London provides a fantastic platform to help fulfil 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. 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.
Here is our team of SUPER RIDERS!!!
Clare Fraser
I am an indoor cycling instructor and I have my own studio in Weybridge. I am also planning on doing an 8 hour spin-a -thon where people can come and join in on the hour for 1 hour at a time and donate money for my fund raising in payment for the class.
Peter Southey
I was told I needed to get fit and this seemed a good idea, well it did at the time, as I was helping a good cause as well as me. Cycling experience almost none.
Team Cashew and Ginger: Caitlin Limmer and Moni Lau
Caitlin: I have no riding experience, am doing it purely to raise money and awareness of MDS and make a big noise with my great, great friend Moni on the back. Clare Fraser is also a great mate of ours and she is a very good cyclist. All 3 of us have been in sport for years, but Moni and I are defo a liability on the bike - however we are going to try very hard!
Please Donate on Team Cashew and Ginger Virgin Money Giving Page!
Steve Richardson
My experience is that have been riding since my teens and now I am 67. I completed Ride London 2015 and 2016. I have been an MDS patient since 2011 but have been lucky to maintain my levels on EPO
Darren Laverty
I work with Russell and have known him for too long!! Around 30 years now. I have just started cycling but I always like to have a challenge to focus on and keep my fitness levels up and keep me out of the pub. I have seen Russell’s journey with MDS and cannot think of a better cause to raise a few pounds for.
Alex Myers
I'm a fairly regular cyclist, though have never done Ride London. I'm now mostly into triathlons, but last year did the Granfondo Stelvio in Italy which is a similar bike ride to this in distance. My father in law Don Barrett, who is Treasurer of MDS Patient Support, is very passionate about the work the charity is doing so I wanted to try and support with fundraising along with giving Ride London a go.
We would love more supporters to come on the day to be on the course and look out for our #TeamMDS. For details on the day, please email us to fundraising@mdspatientsupport.
MDS, 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.
Team Cashew and Ginger
Alex Myers
Email Us fundraising@mdspatientsupport
If you wish to read more about why we need funds – please consult our Support Us pages
MDS Treatment: Prof. David Bowen talks about genetics, where we are now and where we’re heading
Written by Manuela Rotstein
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
Jan Randall (nee Buchanan)
Written by Manuela Rotstein
It is with huge sadness that we announce the passing of Jan Randall.
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.
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.
