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Radio Day: October 25, MDS World Awareness Day. Catch-up on the stories of 4 people affected by MDS

Posted on 07/11/2018 at 4:32 pm.

We produced a Factsheet for GPs and Healthcare Professionals to help them spot early signs of MDS and refer patients to a specialist.

GPs are advised to be aware of patients who have persistently low blood counts or an unexplained need for blood transfusions. It is also important to note that some people with MDS don’t present any signs or symptoms at the time of their initial presentation, and that the disease is often only picked up via routine blood tests or procedures, which sets MDS apart from other blood cancers.

What are the needs of patients suffering from MDS in the UK? Read the MDS UK Patient Survey Results

Posted on 15/10/2018 at 2:56 pm.

Written by Manuela Rotstein

In 2012, MDS UK Patient Support Group started a research to assess the needs of patients suffering from MDS in the UK. To date, this is the largest UK-specific research ever conducted focusing exclusively on needs, experience and quality of life of MDS patients. The aim of the survey is to better understand the impact of MDS on patients’ quality of life and to ultimately improve the care and support offered to MDS patients.
Thus far, the progress of the survey has been positive; we have collected results from 171 participants across UK covering all age groups and including patients without access to the internet.

The following report has been compiled by Raqeebah Agberemi.

Based on our survey, 83% of the participants are over 65 years old. This correlates with data published worldwide which states that 85% of MDS patients are 65 years and above. The median age group for MDS diagnosis is 74 years old. Based on our survey, the calculated median age is 70.

MDS Treatment

Development of treatment for MDS has made extraordinary progress over the past 10 years and there are no signs of this progress slowing down. A pioneering drug, Azacitidine which was made available in February 2011 UK for patients living in the UK with intermediate and high risk MDS was developed to help slow the progression of the disease while Lenalidomide has been effective for patients with the del 5q syndrome.

What do UK MDS patients say about the treatment options provided at the time of diagnosis?

53% reported being placed on Watch & Wait
47% reported being placed on active treatment or supportive care

More than half of the participants were told they were on Watch & Wait status. Being placed on Watch & Wait can be extremely stressful due to the uncertainties about the disease progression therefore adding to the worry that comes naturally with being diagnosed with MDS.

Question: How frequently did you think about MDS in the last 4 weeks? (The traffic light colours of green, yellow/amber and red are used to encode positive, neither positive or negative and negative responses.)

More than 50% Watch & Wait patients thought about MDS to a significant extent compared to those placed on active treatment or supportive care (see graph below)

Reaction to being placed on Watch & Wait differs amongst patients, some patients are able to cope well with it. However, some may suffer from anxiety or depression as a result of being placed on Watch & Wait. Anxiety or depression might affect some aspects of their lives; it might lead to difficulties relating to their work life thus resulting in temporary leave of work or reduction in working hours. This might have some financial consequences to the patient.

The feeling of being anxious or depressed is aggravated by the lack of information at the time of diagnosis. Based on our survey,
38% Watch & Wait patients did not receive any written information at the time of diagnosis
43% Watch & Wait patients received minimal verbal information at the time of diagnosis

These figures illustrate the importance of providing adequate information to patients. If patients are provided with information in a patient friendly and personalised manner at the earliest stage of diagnosis, this might reduce the worry and help them cope well with being placed on Watch & Wait. Likewise, it will reduce the time a patient spends in consultations with the clinical team, or even with a counsellor, thus freeing up time to see other patients.

When asked about the greatest challenge of having MDS, Watch & Wait patients said:

‘‘The Watch & Wait policy. Regular 6x weekly visits to the hospital for blood tests then lack of feedback on the results’’
‘‘The uncertainty over whether there will be progression of the disease’’
‘‘Watch & Wait is a bit like having a sharp sword hanging about your head. It seems to get lower every time you are heading for your next blood test’’

In comparison, patients on active treatment/supportive care said:

‘‘The side effects of Azacitidine’’
‘’The disruption to our lives. Unable to plan ahead as Chemo dates can change if my blood is not right. Having platelets every week is a real nuisance’’
‘’Waiting 8 hours for blood transfusion’’

Support for MDS patients and carers

There is a constant need to access information and advice for MDS patients and their carers. Access to these services provides them with knowledge as they face several challenges throughout their MDS journey. Access to a clinical nurse specialist, appropriate signposting to services and peer to peer support have been found to be useful for MDS patients.
We currently have local groups in several parts of the UK. If you would like to attend any of our meetings, please visit our page for further details or call us on 020 7733 7558.

Access to MDS Nurse or Haematology Clinical Nurse Specialist

Question: Do you have access to a specific MDS Nurse or Haematology CNS?

6% reported they had no access to a CNS but would like to see one 19% reported that they had never been offered this service
It is important that MDS patients have access to a Clinical Nurse Specialist (CNS) because they play a vital role in the management of patients concerns and support their health and wellbeing. We liaise with Clinical Nurse Specialists in several hospitals across the UK to provide assistance and to make it known that support and care is available for MDS patients.
According to the National Cancer Patient Experience Survey (NCPES), having a CNS is an important factor found to be positively associated with a better patience experience.1
To understand the importance of CNSs, we divided the patients who answered the question, ‘’Do you have access to a specific MDS Nurse or Haematology CNS?’’ into five categories based on their level of worry.

Question: How frequently did you worry about MDS in the last 4 weeks? (The traffic light colours of green, yellow/amber and red are used to encode positive, neither positive or negative and negative responses.)

40% of those who had no access to a CNS but wants to see one and 52% of those who had never been offered the service, worried about MDS to a significant extent. The lack of access to a named CNS aggravates the emotional impact of MDS and the findings of our survey illustrates this.

MDS patients are often confused at the time of diagnosis mainly due to the fact that they have never heard of disease; having a CNS as a main point of contact makes it easier for patients to ask questions pertaining their diagnosis and treatment thus reducing the emotional impact of MDS. CNSs can also recommend additional support services to patients should they need it. Likewise, having access means that CNSs can quickly recognise any developing issues that may require attention thus potentially avoiding any major problems.

As the ageing population continues to increase, so will the challenge of supporting patients with MDS. The availability of treatments and development of new ones means that patients will live longer with the condition thus illustrating the importance of CNS as patients will need continuous support over the years.

Information about MDS UK at the time of diagnosis

Question: At the time of diagnosis, did you receive information on MDS UK Patient Support If not, how did you hear about MDS UK Patient Support Group?

More than half of the participants said they did not receive any information on MDS UK at the time of diagnosis.
Half of the participants who had not received information about MDS UK, learnt about MDS UK via the internet.

Due to lack of information on MDS at the time of diagnosis, patients and carers have to take active steps when trying to find out more information about MDS. This makes them vulnerable to coming across unreliable, inaccurate and out of date online information.

Recommendations

In the long term, providing information at the earliest stage of diagnosis to all patients can really save substantial time and concern to all involved (patients, families, clinical staff).
Practical Suggestion: Some haematologists take it a very helpful step further: after seeking express consent from the patients, they copy MDS UK Patient Support Group into the patient’s clinic letter requesting us to send information to the patients. This step takes only one minute during consultation and ensures no patient goes potentially unsupported.

Summary of findings

Adequate provision of information at the earliest stage of diagnosis should be provided to Watch & Wait patients to help them better understand diagnosis and cope better with it.
Emotional and psychological support should be offered at the earliest stage to Watch & Wait patients who need it in order to help them navigate some of the challenges they might be facing.
Provision of information at the time of diagnosis is important to prevent patients from becoming vulnerable to inaccurate and unreliable information on the internet.
All MDS patients should have access to a clinical nurse specialist who can provide support following their diagnosis.

Make Blood Cancer Visible: The Patient Stories

Posted on 28/09/2018 at 9:19 am.

Written by Manuela Rotstein

Why are we campaigning to Make Blood Cancer Visible?

September is blood cancer awareness month and we are working together to #MakeBloodCancerVisible.

Blood cancer affects 240,000 adults and children in the UK and claims more lives each year than either breast or prostate cancer. Yet, blood cancer does not get the priority and recognition it deserves. (See full information article in Bloodwise)

During September, we are calling on governments in the UK to make blood cancer a priority, starting with clear long-term commitments in their next cancer plan.

For MDS in particular, and other rare forms of blood cancer, the campaign helps to make them known among the general public, so that MDS patients and carers, as well as doctors and nurses get to know the disease and its effects better.

The Make Blood Cancer Visible installation, in Edinburgh this weekend, features 10 life-sized transparent figures, which represent the ‘unseen’ or invisible nature of blood cancer, and engages passers-by while encouraging them to show their support for the campaign.

Each of the figures shares the individual experience of those living with blood cancer through audio stories, making them seen and heard.

The following slideshows, showing images, audio files and quotes, and the Audio Stories try to capture the spirit of the installation.

Please share them on Facebook and Twitter, send emails and messages to your friends and family and help us #MakeBloodCancerVisible this September and onwards.

Make Blood Cancer Visible Campaign in Edinburgh from 24 to 29 September

Posted on 19/09/2018 at 1:52 pm.

Written by mariano

Make Blood Cancer Visible 2018 coverage from Manchester

Posted on 18/09/2018 at 6:00 pm.

Written by sophie

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

Make Blood Cancer Visible 2018 coverage from Wales

Posted on 14/09/2018 at 8:30 pm.

Written by Manuela Rotstein

Take Part in Make Blood Cancer Visible 2018 this September

Posted on 05/09/2018 at 7:59 am.

Written by Manuela Rotstein

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.

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

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.

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

September Blood Cancer Awareness Month

Posted on 29/08/2018 at 11:03 am.

Written by Manuela Rotstein

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.

Dr Martin Wermke explains how iron overload can affect the outcome of stem cell transplant

Posted on 26/06/2018 at 3:49 pm.

Written by Manuela Rotstein

EPO (Erythropoietin) & other Erythropoiesis Stimulating Agents (ESAs) in the Treatment of MDS

Posted on 21/06/2018 at 10:43 am.

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.

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 is a rare form of blood cancer

Annually 2,240 patients in the UK are diagnosed with myelodysplastic syndromes (MDS)

11 interviews

130 minutes of airtime on local and national radio stations

We reached 1.78m people!

Catch up online by listening to their brave testimonies below:

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Latest Patient Stories

MDS UK and the Cabbage Patch 10 Mile Race

After the Cabbage Patch Run the lovely runners from the BearCat Running Club marked MDS Awareness Day with a wonderful a-cappella song!

MDS UK Patient Support Group: Supporting GPs and Healthcare Professionals

MDS UK Patient Support Group: Supporting MDS Patients and their Families

People access more than 900 pages on MDS UK website every single day. On Radio Day people visited almost 2,000 pages!

And we also organise local group meetings. Watch Claudia talking about the many benefits of attending a meeting

Join your Local MDS Group

When do they meet and how to contact them

MDS Treatment

What do UK MDS patients say about the treatment options provided at the time of diagnosis?

Support for MDS patients and carers

Access to MDS Nurse or Haematology Clinical Nurse Specialist

Information about MDS UK at the time of diagnosis

Recommendations

Summary of findings

MDS UK May 2018 Newsletter

Latest News

Why are we campaigning to Make Blood Cancer Visible?

Make Blood Cancer Visible - The Patients Stories

Help us Campaign to Make Blood Cancer - and Myelodysplastic Syndromes - Visible

Make Blood Cancer Visible - September 2018

Latest News

Mon 24th - Sat 29th Sept: Waverly Mall, Edinburgh, EH1 1BQ

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

Photos from the Manchester Installation

Latest News

BBC Wales evening news Make Blood Cancer Visible 2018

Interview with Donna talking about her daughter Emily, the Make Blood Cancer Visible campaign and the installation

Western Mail: "We had no idea of the impact Emily had on other people"

Wales Installation Photos

Latest News

For a better understanding and perception of blood cancer

Make Blood Cancer Visible 2018 Installation

MDS UK team was present on the day representing all MDS UK patients

MDS patients and carers talk about their MDS experience and the Make Blood Cancer Visible campaign

MDS Symptoms Before Diagnosis

More images of the fantastic MDS Representation on the day

DAME KELLY HOLMES GIVES HER SUPPORT TO #MakeBloodCancerVisible

Latest News

Make Blood Cancer Visible

Make Blood Cancer Visible Installation in Central London

MDS UK members were also there raising awareness

Tina at Make Blood Cancer Visible

Blossom & her story at the Installation

Claudia's display at Make Blood Cancer Visible

The 2017 Campaign

Latest News

Iron Overload: A Patient Story

Bergit Kuhle's experience with Chelation Therapy

Watch the latest videos on MDS