General Information and sub-types of MDS

• FACTSHEET – MDS – a 2 page sheet for general information on MDS – coming soon
• BOOKLET – General MDS Patient Handbook   All you need to know about MDS to start off with.  Paper copies are available via our office – please ask.  Includes explanations on sub-types of MDS, symptoms, tests needed, severity and treatment options.
• BOOKLET – What does my bone marrow do?   MDS Foundation booklet explaining the role of the bone marrow and stem cells in simple language and with illustrations.  Paper copies available from our office.
• SLIDES – MDS – Diagnosis, Treatment and Research updates by Dr Austin Kulasekararaj, London Patient Forum 2012.
• SLIDES General MDS – Dr Chris Dalley – Royal Hallamshire Hospital, Sheffield, London Patient Forum September 2010.
• SLIDES – High Risk MDS and hypomethylating agents - Dr Kavita Raj,  Consultant Haematologist Guys and St Thomas’ Hospital, London Patient Forum September 2009
• BOOKLET – Leukaemia and Lymphoma Research’s (LLR) patient booklet on MDS can be downloaded here.   Paper copies can be obtained free of charge by contacting LLR directly.
• FACTSHEET – The LLR also provides a Chronic Myelomonocytic Leukaemia (CMML) Factsheet.  Download it by clicking the link.
• All other downloads from LLR are available on their download page here.  Check all latest versions of their booklets, as well as many other useful information booklets.

Specific Treatments

• SLIDES – Current treatment in MDS – the Irish Perspective - Dr Helen Enright, Dublin, Ireland Patient Forum 17/06/11
• Supportive care treatments: EPO, GCSF – more information to follow.
• Active MDS treatments are Vidaza and Revlimid, as well as some types of chemotherapy:
• Vidaza – azacitidine – is a treatment licensed for specific MDS sub-types and levels of severity: Intermediate2 and high-risk MDS, CMML and AML.  It is a type of chemotherapy administered in out-patient clinics. This is done via injections 7 days a month – as long as the patient needs it.  We will add further information shortly.  In the meantime please also consult the Macmillan website about azacitidine: Macmillan azacitidine
• NEWS ARTICLE – Azacitidine patient story:  Rodney Taylor was interviewed in the Daily Mail in March 2010 about his MDS treatment with azacitidine – please read if you are seeking more information on this drug.  Daily Mail article March 2010 – Rodney Taylor
• CLINICAL PAPER – If you are receiving the treatment azacitidine/Vidaza – and possibly experience a rash at the injection site, evening primrose oil can help.  Please read the following information and always check with your nurse or physician first: Evening Primrose Oil
• Revlimid – lenalidomide – is an oral treatment given to the specific MDS sub-types del 5q (or 5q-) patients – who are also transfusion dependant. Revlimid is already available in the UK – but via Individual Funding Requests only for now.  More information to follow soon.

Transfusions

• BOOKLET – Why you need transfusions and how they help.  Also includes information about iron overload and iron chelation which can become relevant if you are receiving transfusions on a long-term basis: Iron Overload Book
• SLIDES - Presentation: Understanding myelodysplasia and Introduction to Blood Transfusion
• February 2012 – New resource for patient information on blood transfusion. The following NHS link includes information about all aspects of blood transfusion: Link provided by the Chief Medical Officer’s National Blood Transfusion Committee ‘Patient Involvement Working Group’ here  Please be aware the information is not specifically targeted at MDS – but all conditions needing blood transfusions.

Life style advice

• FATIGUE FACT SHEET – a 2 page general information sheet – what is important to know about MDS and fatigue.
• FACTSHEET – Nutrition – a 2 page general information sheet on eating and MDS
• SLIDES – MDS and Fatigue – Presentation: Making the Most of your Energy & Taking Control of Fatigue, Cambridge Patient Forum 12/11/10
• SLIDES – Fatigue in MDS presentation by Tanya Navarro, Occupational Therapist
• ARTICLE – Dr. David Steensma’s article explaining fatigue in MDS: A Frank Discussion About Fatigue In Patients With Myelodysplastic Syndromes. Dr. Steensma is a physician based in the USA whose primary area of research focuses on myelodysplastic syndromes and related conditions.
• ARTICLE – Fatigue and Fatigue Management – Article written by Julie Burkin, Occupational Therapist & Lead Practitioner Long Term Conditions Service, Palliative Care Team, from Addenbrooke’s Hospital Cambridge
• SLIDES – Healthy Eating and Neutropenic Diets in MDS presentation by Natasha Jones, Specialist Dietitian – Haematology & Palliative Care
• SLIDES – Quality of Life and MDS by Geke Ong, London Forum September 2012
• SLIDES – Quality of life - Slide Presentation: What is Quality of Life?
• Anxiety and depression can be a problem – ask to see a counsellor at your hospital.  If this service is not available in your area – do consult the directory in our Useful Links page, for a private counsellor.  Even a single session can help to talk things through.

Bone Marrow Transplants

• Book:  7 Steps handbook about Bone Marrow Transplant. A paper copy can be obtained free of charge from LLR – Leukaemia and Lymphoma Research
• Slide presentation: Transplantation for Myelodysplasia - Dr Catherine Flynn Consultant Haematologist St James’s Hospital, Dublin Patient Forum 17/06/2011

Other helpful and practical information

• Travel Insurance FACTSHEET – coming up soon – also look up our Forum – and travel insurance folder for up to date information on good and bad travel insurers.
• If you are using a Hickman line – we have received the following tip and new device from a patient who invented a special holder that makes the central line a little more comfortable.  Check her website www.centrallineholder.com.  She devised the product following her own experience.   She is now looking for patients to test it and review the product.
• A Brief Introduction to the Benefits System by Fiona Crowe, Macmillan & Dimbleby Benefits Advisor
• Macmillan Benefits National Helpline 0800 500 800 (we recommend calling this helpline first before other helplines)
• Disability Living Allowance & Attendance Allowance 0845 7123 456
• Employment Support Allowance 0800 055 66 88
• Carers Allowance 0845 608 4321
• Patient Transport Bureau 0300 111 213
• Age UK Advice 0800 169 65 65
• Community Legal Services Advice Line0845 345 4 345
• Adviceguide website is the main public information service of Citizens Advice Bureau
• Community Legal Service provide and promote civil legal aid services:

Information about MDS UK Patient Support Group

• Download our leaflet regarding MDS - stocks to be ordered via our main office
• Poster for display in hospital waiting rooms – feel free to print and use – or request a laminated copy via our office
• Want to start your own local MDS group for informal chat and mutual support ?   Download 2 documents: Tips and guidelines to follow, as well as a poster you can adapt and use for the hospital or GP waiting room: Patient Support Group Guidelines and a Poster (Microsoft Word document for you to download and edit) for display in hospital or GP waiting rooms
• What is MDS? 2-page information sheet produced by MDS UK and the MDS Foundation.  Explains what MDS is and what the support groups do. Useful for those wanting information about MDS to share with friends and family and for those planning fundraising and other events.
• Welcome to MDS UK Patient Support Group Patient and Family Forum, London 2012
• Presentation: Welcome to MDS UK Patient Support Group Patient and Family Forum, Cambridge Patient Forum 12/11/10
• General MDS UK Presentation, Patient Support Group Information, London Patient Forum 24/09/10

• Azacitidine patient story:  Rodney Taylor was interviewed in the Daily Mail in March 2010 about his MDS treatment with azacitidine – please read if you are seeking more information on this drug.  Daily Mail article March 2010 – Rodney Taylor

• Quality of Life questionnaire used to assess how you are coping with aspects of MDS and to what extent the condition affects you. Bring this to your physician to help discuss your care. Click here to download and print the questionnaire.  You might find it helpful to fill out this questionnaire at every consultation to notice any positive or negative changes in time – and share it with clinical staff.   This questionnaire has been developed and validated by an MDS specialist and is being used in many European countries for the purpose of assessing Quality of Life in MDS patients specifically.  Further information can be found here

If you are using this questionnaire, and are happy to share your responses with us, please post or email your completed questionnaires to us – as this will help with information we collect on Quality of Life data.  All questionnaires will be anonymous.