MDS UK

Information Material

MDS UK Annual National Patient & Family Forum 2015 – London

 

MDS UK Annual National Patient and Family Forum, 3rd October 2014, London

General Information and sub-types of MDS

  • BOOKLET - Building Blocks of Hope – MDS Foundation
    A special and full information book on MDS – produced by the international MDS Foundation. All you need to know about MDS.
    Includes explanations on sub-types of MDS, symptoms, tests needed, severity and treatment options.  To download – or as a paper copy.
  • Factsheet logo2 page sheet for general information on MDS - coming soon

 

  • 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.

 

 

 

 

  • 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 logoThe 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

 

  • Supportive care treatments:
    • EPO injections (short name for Erythropoietin) – for low haemoglobin/anaemia.
      Erythropoietin is a natural hormone produced by the kidney, which promotes the formation of red blood cells by the bone marrow. The resulting rise in red cells increases the oxygen-carrying capacity of the blood.
      The natural erythropoietin hormone level can be detected and measured in the blood (the EPO test).  If your natural level is low – you may be given EPO injections to help boost the production of red blood cells.  This may help postpone the need for blood transfusions.
      EPO injections are self-administered.
      However – if your natural erythropoietin is high, you are unlikely to benefit or respond to these.
    • GCSF injections – may be given to you to help avoid infections.
      GCSF is also self-administered

 

  • Active MDS treatments:
    • MDS Drug – Vidaza (azacitidine)
      AZA (short)
      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.
      Please also consult the Macmillan website about azacitidine: Macmillan azacitidine
    • MDS Drug – Revlimid (lenalidomide)
      Revlimid is an oral treatment licensed specifically for MDS sub-types del 5q (or 5q-) patients – who are also transfusion dependent.
      Revlimid is recommended by NICE for routine use in NHS – for isolated del 5q.
      For patients with del 5q plus one other chromosomal abnormality, Revlimid is available via the Cancer Drug Fund.
      Revlimid is sometimes also used for MDS patients who do NOT have the del 5q abnormality – and has been shown to be effective in a small number of patients.  Ask your haematologist if this may be an option for you.

 

  • 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
    And its 2013 update Rodney Taylor article – Daily Mail – 2013update
  • 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

 

Transfusions

 

  • 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

QUALITY OF LIFE – GENERALLY

 

 

NUTRITION

A 2 page general information sheet on eating and MDS

 

FATIGUE

  • Factsheet logoFATIGUE FACT SHEET – a 2 page general information sheet on fatigue.
    What is important to know about MDS and fatigue
    What you can do to help yourself feel a little better

 

 

MOOD and DEPRESSION

  • Anxiety and depression can be a problem – ask to see a counselor 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

 

Other helpful and practical information

TRAVEL INSURANCE

 

 

HICKMAN LINE

  • 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.

 

BENEFITS

  • Macmillan SLIDES: 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 Line 0845 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

  • Poster for display in hospital waiting rooms.
    Feel free to print and use – or request a laminated copy via our office

 

  • Factsheet logoWant 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 – final
  • Poster (Microsoft Word document for you to download and edit) for display in hospital or GP waiting rooms

 

  • What is MDS_InfoFebr2015
    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.

 

  • MDS slides logoWelcome to MDS UK Patient Support Group Patient and Family Forum, London 2012

 

  • MDS slides logoWelcome to MDS UK Patient Support Group Patient and Family Forum
    Cambridge Patient Forum 12/11/10
  • MDS slides logoGeneral MDS UK Presentation
    Patient Support Group Information, London Patient Forum 24/09/10

 

  • 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.