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
- Detailed information from Australia’s Leukaemia Foundation: in their 2025 booklet Myeloproliferative neoplasms: a guide for people with MPN and their support people.
- 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)
- Printable MPN treatment information (in English, Arabic, Chinese and Vietnamese).
- Prepare for your haematology appointments – some suggestions.
- The MPN AA’s October 2025 MPN Education symposium – videos and presentations are highly recommended.
- Latest international MPN conference videos and presentations (2025) prepared for patients from the world’s MPN experts. These are always worth watching to develop further understanding of your MPN.
- MPNs and inflammation – brilliant video explaining why inflammation is a huge problem in MPNs and how to deal with it – by international MPN specialist, Dr Hans Hasselbalch.
Living well with your MPN
- Cardiovascular health It is extremely important to maintain good cardio-vascular health and keep your cholesterol under control. Speak to your GP to ensure that this is being well monitored. Video presentation from a cardiologist explaining about MPNs and cardiovascular health.
- Take care to avoid blood clots Having an MPN puts us at higher risk of having a blood clot, which can include splanchnic vein thromboses, a stroke or heart attack. So know the signs and how to prevent clots.
- MPN symptoms For more information about how to manage any MPN symptoms you may have.For any patients suffering with fatigue, the Leukaemia Foundation has produced two short very helpful videos recommended by haematologists about cancer related fatigue.
- 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 -how to live your best life with MPN;
– exploring real life with blood cancer – a mind and body experience – from psychologist Jane Fletcher and haematologist Dr Cecily Forsyth.
– consider wellness activities such as yoga, aerobic activity, strength training, meditation, massages, support groups, improved nutrition etc. An international study of hundreds of MPN patients showed wellness activities had a pattern of decreased levels of symptom burden, fatigue, depression, and a higher quality of life for MPN patients (Survey of Integrative Medicine in Myeloproliferative neoplasms – the SIMM study).
Getting support
- 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.
- Leukaemia Foundation provides immediate support in Australia via:
– Online Blood Cancer Support Service
– Online support and/or education groups
– Emotional Support Services - Facebook. A very supportive and responsive Facebook group for Australian and New Zealand MPN patients is run by Josie, an MPN patient and her Admin team. 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 information and prompt advice available on any number of MPN related matters from fellow MPN patients via this page.
You may wish to consider using Facebook just to be part of this supportive group, even if you’re not accustomed to using Facebook. - Canberra support group. If you live in Canberra, a weekly walking and/or coffee and chat group is held every Monday morning To join, or for more information, please see HERE
- South East Queensland support group. If you live in Brisbane and surrounds, there are two quarterly support groups run by two patients. For more information, please contact the MPN AA.
MPN wallet cards and ‘Living well’ brochures
Wallet cards. If you would like a free wallet card, contact the MPN AA and don’t forget to include your postal address.
Patient brochure – Living Well: What can I do to help myself if I have an MPN
The MPN AA has developed a patient brochure about living well with an MPN.
If you would like a brochure, please contact us including your name and postal address at our Contact MPN AA page
