MDS Patient Handbook

MDS UK has produced a brand new MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

It has been written to help you understand more about MDS. It describes what they are, how they are diagnosed and treated and also the expected outcome (prognosis). It also provides information on coping with the emotional impact of an MDS diagnosis.

If you wish to obtain a copy of the booklet please contact us by email or telephone:
Send Mail or call 020 7337558

57th Annual Meeting of the American Society of Haematology (ASH) Report by Mike Dennis

Aimed at clinicians, this article summarizes how the increasing understanding of the biology of MDS creates more informed treatment decision-making. December 2015

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.

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 view online or download as a paper copy.

General Information and sub-types of MDS

Click on the icon to download the documents

MDS - Diagnosis, Treatment and Research, Dr Austin Kulasekararaj

General MDS, Dr Chris Dalley

High Risk MDS and hypomethylating agents, Dr Kavita Raj

Genes and Genomes and MDS, part 1 - Nicholas Lea

Genes and Genomes and MDS, part 2 - Nicholas Lea

Myelodysplastic Syndromes (MDS)

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.

Chronic Lymphocytic Leukaemia

Bloodwise (was know as Leukaemia & Lymphoma Research) also provides a CMML Factsheet. All other downloads from Bloodwise are available on their download page Patient information bookletsCheck all latest versions of their booklets, as well as many other useful information booklets

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

Click on the icon to download the documents

AGENDA - MDS Forum, London, 3rd Oct 2014

SLIDES - Coping with Anxiety, Anne Crook

HANDOUT - Coping with Anxiety, Anne Crook

Myelodysplastic Syndromes, Part 1, Dr Austin Kulasekararaj

Myelodysplastic Syndromes, Part 2, Dr Austin Kulasekararaj

MDS Patient Forum, Sophie Wintrich

MDS National Survey, Monika Janosik

Specific Treatments

Current treatment in MDS – The Irish Perspective

Slides to download: What is myelodysplasia?, Symptoms, Diagnosis and prognosis, Myelodysplasia therapy, Supportive care, Non-intensive therapy, Bone marrow transplant
Dr Helen Enright, Dublin, Ireland Patient Forum 17/06/2011

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.

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 – 2013 update

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

A handbook for Adult MDS Patients

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

Understanding Myelodysplasia and Introduction to Blood Transfusion

Dr Dora Foukaneli
Addenbrooke’s Hospital and NHSBT
Cambridge

Life style advice

Quality of Life - Generally

Click on the icon to download the documents

MDS and Quality of Life By Geke Ong, London Forum September 2012

Fatigue Fact Sheet

Nutrition

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Nutrition: Fact sheet for Myelodysplastic Syndrome (MDS) Patients

Diet and Aplastic Anaemia, MDS, Acute Myeloid Leukaemia by Andrea Davis

Healthy Eating & Neutropenic Diet by Natasha Jones

More tips and advice from patients themselves on our MDS Message Forum
Nutrition and Health Supplements – Patient Experiences

Fatigue

Click on the icon to download the documents

Fatigue: Fact sheet for Myelodysplastic Syndrome (MDS) Patients

Making the Most of your Energy & Taking Control of Fatigue

Fatigue Slides by Tanya Navarro 2011

Are You Tired? A Frank Discussion About Fatigue In Patients With Myelodysplastic Syndromes By David P. Steensma

Fatigue and Fatigue Management by Julie Burkin

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

Click on the icon to download the documents

 

7 Steps handbook about Bone Marrow Transplant

Current treatment in MDS – The Irish Perspective

The Next 7 steps: looking further down the line at recovery after a bone marrow transplant

Read more on transplants from patient experiences on our MDS Message Forum:
Bone Marrow /Stem cell transplant – Patient’s experiences

Other helpful and practical information

Travel Insurance

Travel Advice and Insurance

Travelling and pre‐existing medical conditions: If you have a pre‐existing medical condition like MDS it is important to consider taking some extra steps to prepare for your trip. Fact sheet for Myelodysplastic Syndrome (MDS) Patients

More tips, advice and names of insurance companies on our MDS Message Forum:
Travel Insurance advice from other patients

Hickman Line

Are 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. She devised the product following her own experience. She is now looking for patients to test it and review the product.

Benefits

Introduction to the Benefits System

Macmillan Slides by Fiona Crowe

Macmillan & Dimbleby Benefits Advisor

MDS UK Patient Support Group Conference September 2012

 
  • Macmillan Benefits National Helpline 0800 500 800 (we recommend calling this helpline first)
  • 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

Click on the icon to download the documents

Whats Is MDS? information sheet produced by MDS UK and the MDS Foundation.

MDS UK Patient leaflet

Hospital staff can order stocks via our main office on 0207 733 7558
Or online on our Contact us page

MDS UK Patient Poster

A4 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

Starting a Local MDS Support Group MDS UK Guidelines

Word document for you to download and edit for display in hospital or GP waiting rooms

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.

Please 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. Download

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.

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