If you’ve just been diagnosed with an MPN, it can be overwhelming for you and your family but please know that you are not alone and there is support and information available. We have put together some first steps below that might help you to navigate through the information available.

MPNs are generally regarded as chronic conditions. It’s worth noting that although the World Health Organization has classified MPNs as blood cancers because the blood cells are behaving in an abnormal/uncontrolled manner, in reality MPNs are mostly much less life threatening/changing for patients than acute blood cancers. When diagnosed and managed well, most MPN patients have near to normal life expectancy.

Also relevant is that many MPN patients experience few if any symptoms. Others may experience some symptoms such as fatigue, itching after a shower, headaches or less often, bone pain. Many symptoms will however be resolved once blood counts are under control. It is important to advise your haematologist if you are experiencing any symptoms so that everything can be done to minimise symptoms and ensure your disease is kept under control.

                     

Image 1: MPN Information booklet         Image 2: Guide to best cancer care for MPNs

Learning about your MPN

  1. Detailed information from Australia’s Leukaemia Foundation:
    and the Leukaemia Foundation’s booklet Myeloproliferative Neoplasms – a guide for people with MPN and their support people. *this booklet is in the process of being revised due to many MPN developments since 2021.
  2. Guide to best cancer care for myeloproliferative neoplasms – patient specific best practice information available in several languages (English, Arabic, Filipino, Greek, Hindi, Italian, Simple Chinese, Traditional Chinese and Vietnamese)
  3. Printable MPN treatment information (in English, Arabic, Chinese and Vietnamese).
  4. Prepare for Your Haematology Appointments – some suggestions.
  5. Latest international MPN conference videos and presentations (2023) prepared for patients from the world’s MPN experts. These are always worth watching to develop further understanding of your MPN.

Living well with your MPN

  1. Cardiovascular health – It is important to maintain good cardio-vascular health and keep your cholesterol under control.
  2. Take care to avoid blood clots  – Having an MPN puts us at higher risk of having a blood clot, so it’s good to know the signs and how to prevent clots.
  3. MPN symptoms – for more information about how to manage any MPN symptoms you may have.
  4. Keeping well – advice to help you stay well and feel well:
    – nutrition advice and ideas
    – benefits of exercise, maintaining muscle mass and meditation
    – interview with haematologist Dr Cecily Forsyth on how to live your best life with MPN; and
    – Exploring real life with blood cancer – a mind and body experience  – from psychologist Jane Fletcher and haematologist Dr Cecily Forsyth.

Getting support

  1. Wonderful support available in Australia and overseas – this links to a large amount of online and other support. In particular, we highlight the following supports.
  2. Leukaemia Foundation provides immediate support in Australia via:
    – Online Blood Cancer Support Service -https://support.leukaemia.org.au/welcome-page
    – Online support and/or education groups – see Upcoming Events.
    – Emotional Support Services – see Emotional Support Services https://www.leukaemia.org.au/how-we-can-help/emotional-support-services/
  3. Facebook. An active and supportive Facebook group for Australian and New Zealand MPN patients – see  Australia and NZ MPN support community. It can be very reassuring to connect with other patients who are going through similar physical and emotional challenges, and there is a lot of information and advice on any number of MPN related matters on this page.  In addition, fellow MPN patients can often provide prompt feedback.
    You may wish to consider using Facebook for this supportive group, even if you’re not accustomed to using Facebook.
  4. Canberra support group. If you live in Canberra, a weekly walking and/or coffee and chat group is held every Monday.
    To join, or for more information, please see HERE

MPN wallet cards available for free

Wallet cards. If you would like a free wallet card, contact the MPN AA and don’t forget to include your postal address.

COVID-19 page – if you are concerned about how your MPN might be affected by COVID-19.

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