1. SUB-TYPE OF MDS: Patients who have previously received a hypomethylating agent (eg. Azacitidine, Decitabine)
  2. SEVERITY OF MDS: Intermediate-2 or High risk
  3. NAME OF DRUG: Durvalumab, Tremelimumab, Azacitidine
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How is Quality of Life in patients with Myelodysplastic Syndromes (MDS) measured?

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? In this article David Steensma, MD FACP at the Dana-Farber Cancer Institute and Harvard Medical School, Boston, Massachusetts USA discusses how to incorporating the Patient’s Voice into MDS Care and Research. Measuring quality of life: how to capture […]

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Bone marrow donor drive at RAF Coningsby

On Thursday 22nd of November MDS UK was represented at a bone marrow donor drive at RAF Coningsby alongside the bone marrow donor charity, DKMS. The event was prompted by the husband of Emma Sheldon, Adrian Cooper, following his wife’s diagnosis of MDS. As a great number of patients will know, the initial emotions that […]

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MDS UK Patient Support Group Newsletter – November 2018

Read all about: Patient’s Stories: Kes Grant ‘Coping with long stays in hospitals…’; Andrew Scott Married to MDSDS; Tilly Tilbrook ‘How I felt about losing my hair…’; Christina Fowler ‘Decisions, decisions…’ Research: Prof D Wiseman Chronic Myelomonocytic Leukaemia (CMML), Prof D Steensma, Measuring quality of life; Prof T Chevassut The effects of vitamin C, Raqeebah […]

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The European MDS Registry: learning about the ‘real’ MDS patients

Research FOR PatientsFor an informed and empowered opinionand an improved consultationHave you made your clinical paper accessible yet? By Prof. David Bowen In order to develop new drugs to treat MDS, clinical trials are mandatory, typically testing the new drug against the treatment that is considered to be the standard at that time. However patients […]

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Catch up on the Cabbage Patch 10 Mile Race 2018: The Highlights

By Russell Cook, runner, ex-MDS Patient and Deputy Chairman Trustee & Director of MDS UK Patient Support Group Sunday 14 October saw MDS UK represented at the iconic Cabbage Patch 10 mile race. You are probably wondering why it’s got such a funny name! Well, it’s named after the Cabbage Patch Pub in Twickenham, a […]

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