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 other 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.
- Detailed information from Australia’s Leukaemia Foundation: Myeloproliferative Neoplasms (MPNs).
- A 2021 booklet Myeloproliferative Neoplasms – a guide for people with MPN and their support people (pictured above) also prepared by the Australia’s Leukaemia Foundation.
- Excellent illustrated overview of MPNs for newly diagnosed patients and their families and friends – thanks to the UK’s MPN Voice.
- MPN Treatment information – if your haematologist has chosen for you to start treatment, there is information on each of the treatments currently available in Australia in printable PDF format. It has also been translated into Arabic, Chinese and Vietnamese.
- Prepare for Your Haematology Appointments – some suggestions.
- Support available in Australia and overseas – a large amount of online and other support and information is available.
– Online support and/or education groups run by the Leukaemia Foundation, Peter MacCallum Cancer Centre and MPN Alliance Australia – see Upcoming Events.
– If you live in Canberra, a weekly MPN walking/coffee and chat group is held every Monday. To join, or for more information, please see HERE.
- Patient education videos are available on this site from leading MPN Australian and international haematologists as well as a psychologist and GP.
- Latest international MPN conference videos (2021) prepared for patients from the world’s MPN experts.
- Living well -useful information to help you to feel better. This includes:
– an interview with haematologist Dr Cecily Forsyth on how to live your best life with MPN (with thanks to the Leukaemia Foundation); and
– Exploring real life with blood cancer – a mind and body experience, 2021 – informative, up to date, fact filled and uplifting presentations from psychologist Jane Fletcher and haematologist Dr Cecily Forsyth (with thanks again to the Leukaemia Foundation).
- Wallet cards. If you would like a free wallet card, contact the MPN AA and don’t forget to include your postal address.
12. COVID-19 – if you are concerned about how your MPN might be affected by COVID-19, or have questions about the vaccines, please refer to our COVID-19 specific page.