Courtesy of Ann Brazeau of MPN Advocacy and Education International, here is a wonderful summary video of the MPN highlights from the December 2024 American Society of Haematology (ASH) meeting provided by Dr Ruben Mesa.
Watch the video HERE
Happy new year to MPN patients and their families.
Over a year ago, we publicised an article from Australian oncologist and author Dr Ranjana Srivastava, about the benefits of exercise. Dr Srivastava stated that ‘in addition to standard [cancer] treatments, exercise really is one of the best daily “pills” cancer patients can take to improve their life expectancy. Indeed, if exercise could be marketed as a pill, it would be an outright blockbuster.‘
In the last few days, the MPN AA has seen some further information and evidence about the benefits of exercise…. and because it’s a new year, we thought you might appreciate being inspired by them.
Caution: Haematologists and GPs still caution however to be sure to check with your GP and haematologist before launching on any new exercise program and start slowly and gently if you haven’t exercised before or not for some length of time.
Best wishes from the MPN AA for a wonderful and healthy 2025.
Well let’s just say it was an honour to attend the MPN Horizons conference this year. There was representation from MPN specialists, many MPN advocacy groups, PV, ET & MF patients, pharmaceutical companies and more! The title “Shifting the treatment paradigms of MPN” was very apt. Since I first attended in 2017, sponsors have grown from 3 to now 11! And patient advocacy groups now include Thailand, Korea, and other nations which previously were not represented. It is such a growing global family to address MPN needs.
The almost 70 participants in Warsaw, Poland were from an amazingly geographically spread of 26 countries, including Australia, India, Chile, to Europe, America and Asia! All were very vocal in sharing new developments for MPN from research to trials, to advocacy and patient stories. All sharing a key purpose – to make life better for MPN patients.
Before we dived into a massive 3 day program, it was refreshing to attend a breakfast session where Pharma was the lead and seemed genuinely keen to collaborate and bridge the access barrier different countries and patients in need have. The session was called “Navigating the Path to Equal and Equitable Care” to discuss the most important barriers for MPN patients. I learnt a lot, particularly helpful that there is a special consideration element to access which can be sought with the Pharma company directly for review/access to medications.
This was the third time I have attended Horizons and as a highlight for myself being diagnosed at 18 years of age. I was particularly impressed with the inclusion of a session solely for young MPN patients by Alice Watson from UK. Under the auspices of MPN Voice she has started a group for under 40’s MPN patients to ask questions, address issues such as study/work life balance, starting a family and pregnancy, long term MPN and progression.
The sessions from world leading specialists were very informative. Dr Claire Harrison spoke on state-of-the-art news for Myelofibrosis – including the new prognostic model; how there are more options available for lower risk MF patients; and how the success of Haplo transpants as an option could be explored. A haematologist from Germany, Dr Susanne Isfort, talked about the 3 common MPNs and the drugs she typically uses to treat them, and about data showing that interferon in young patients may be looked at as an option to stop MF progression.
Jon Mattias from MPN Voice presented a session on a great new application “Health Unlocked” which is in development. This app tracks patient symptoms and data that hopefully could be useful for medical appointments and could be integrated into a wearable device. This type of app could be rolled out globally – but more needs to happen on 3rd party permissions and how to protect personal data.
Dr David Ross from Adelaide Australia, spoke on the differences in an individual’s height and gender etc which often isn’t taken into consideration in treating patients. For example, spleen size, depth and volume in a female 5’2 and a man 6’2 can be completely different in what is considered large! He felt spleen volume is more important than just length – something I had never heard of before. There were pictures from Dr Wendy Erber’s lab in Western Australia on machine learning for precise fibrosis scoring which was very interesting.
Elena Greschner from Austria talked about fatigue and how around 80% of MPN patients suffer fatigue. Yet only about 30% of haematologists ask their patients about fatigue. She stressed the fact that Quality of Life is important (as well as the blood cell numbers). Dr Patrick Harrington mentioned patient data in his MPN research that showed a fifth of MPN patients can only work reduced hours or need to stop work early before retirement age. Emphasis was placed on being aware of increased clotting risk, infection and organ failure.
Another brilliant session I thought was valuable were the regional breakouts. Being an MPN AA advocate from Australia – ideas for more Asia/Pacific collaboration were bounced around and very positive. I’m looking forward to seeing some of these ideas come to fruition. Perhaps “Chai for Cancer” events at workplaces in Australia borrowed from advocacy group ‘Friends of Max’ in India’s success.
One of the advocates talked about their “March for Cancer” event and how citizen participation was important! Perhaps we can bring back a lantern walk for MPN and other blood cancer advocacy. The kids love this!
The importance of a healthy diet and exercise were again highlighted. I for one will be trying to implement when my symptoms are ok, a more Mediterranean Diet of real foods (hopefully more than packaged and takeaway) and some gentle exercise for 30 mins a few times a week.
All in all the MPN Horizons conference was absolutely brilliant! A wonderfully informative and collaborative 3 days in Warsaw. I’m looking forward to seeing these developments turn into new application and drugs (some in clinical trials already) and much more positive patient outcomes for the future.
The MPN AA has become aware of a warning placed on the MPN treatment Anagrelide.
While haematologists would already know about the warning, and be managing patients’ treatment accordingly, the MPN AA wants to also inform any MPN patients taking anagrelide. The warning states:
SPECIAL WARNING AND PRECAUTIONS FOR USE
This presentation by MPN specialist Dr Hans Hasselbalch from Denmark is of great interest to MPN patients.
Whilst the topic is inflammation, and the importance of reducing inflammation, Dr Hasselbalch’s talk is comprehensive.
He explains the latest MPN research findings, including the extraordinary discovery that 11.3% of stroke victims have the Jak2 mutation. He also reminds us of the huge numbers of undiagnosed MPN patients around the world and the possibility of targeting and eliminating the Jak2 mutation when it is in its early CHIP stage.
He explains about the risk of inflammatory bowel disease in MPN patients, the benefit of early intervention with interferon and even a potential role for statins for MPN patients, and so very much more.
His talk is available HERE.
ET
The video from the Leukaemia Foundation’s latest webinar is now available.
It features Dr Ranjana Srivastava OAM, a medical oncologist, who has loads of helpful practical advice about how to communicate well with your doctor.
The webinar covers:
The video of the webinar is available HERE.
A study published in the January 2024 issue of Blood authored by 28 haematologists and researchers throughout the UK titled ‘Outcomes and characteristics of nonmelanoma skin cancers in patients with myeloproliferative neoplasms on ruxolitinib‘ raises serious concerns that patients on ruxolitinib should be aware of the risk of non melanoma skin cancers. The study followed 90 patients (median age 73) who had developed NMSCs whilst on ruxolitinib therapy.
There is an article on the MPN Research Foundation website in the US which contains a link to the full study HERE.
“Non-melanoma skin cancers in ruxolitinib-treated patients with myeloproliferative neoplasms (MPNs) behave aggressively, with adverse features and high recurrence. In our cohort, mortality from metastatic NMSC exceeded that from myelofibrosis,” the UK study authors report.
Ruxolitinib can be effective in reducing spleen volume and symptom burden as well as potentially prolonging survival in responding patients. “However, benefits need to be balanced against potential toxicities…” the authors suggest.
“Our study highlights the aggressive nature of NMSCs in ruxolitinib-treated patients with MPN, the importance of counseling patients about the risk of skin cancer before starting ruxolitinib, and a requirement for close dermatological monitoring on treatment.”
Optimal MF management following diagnosis of NMSC remains uncertain, according to the authors. “Stopping ruxolitinib may result in MF (myelofibrosis) symptom flare and potentially increase the risk of disease progression, and it is not yet clear whether ruxolitinib cessation (or switching to an alternative JAK inhibitor) impacts NMSC outcomes. Consequently, if a patient develops an NMSC while taking ruxolitinib, the risks and benefits of each treatment option need to be carefully weighed and discussed with the patient, acknowledging the uncertainties alluded to above, before deciding whether to change therapy.”
“Larger, prospective collaborative studies are needed to better understand NMSC risk and outcomes in ruxolitinib-treated patients with MPN, the report concludes, as are similar evaluations of NMSC risk in patients with MPN treated with other JAK inhibitors.”
The Leukaemia Foundation and Cancer Council have just released Optimal Care Pathways for Myeloproliferative Neoplasms.
Optimal Care Pathways (OCPs) are trusted guides that describe what optimal care for a particular type of cancer should look like. They put the patient at the centre of care decisions.
Covering every step from prevention and early detection through to recovery, living with a chronic disease, or end-of-life-care, they aim to improve patient outcomes through promoting quality cancer care and ensuring that all people diagnosed with cancer receive the best care, irrespective of where they live or receive cancer treatment.
Optimal Care Pathways can guide, support and inform increased collaboration, more effective care, improved healthcare provider–patient communication and patient experience. They have been signed off by state and territory governments.
Each OCP is made up of three documents:
1. The full OCP, a detailed and technical document outlining the pathways and timelines that define optimal care for someone diagnosed with this particular type of blood cancer (for healthcare professional use);
2. A short quick reference guide which summarises the OCP (for healthcare professional use); and
3. Your guide to best cancer care, a version of the OCP specifically designed for patients, carers and their families.
Who are Optimal Care Pathways for?
The OCPs are for healthcare professionals, patients, carers, and anyone affected by cancer or involved in cancer care.
The Leukaemia Foundation advises that OCPs should be read and understood by all healthcare professionals involved in cancer care – haematologists, oncologists, radiologists, surgeons, general practitioners, allied health professionals, nurses and cancer service managers, and trainees.
OCPs for MPN patients titled ‘Your guide to best cancer care’ are available in English for download HERE.
OCPs for MPN patients in several languages are available for download HERE.*
(*click on the grey shaded box that says PDF available for download in your language.)
OCPs for healthcare professionals are available for download HERE.
Exploring the Molecular Aspects of Myeloproliferative Neoplasms Associated with Unusual Site Vein Thrombosis: Review of the Literature and Latest Insights
A paper has just been released about unusual thrombosis sites in patients with myeloproliferative neoplasms.
It includes a literature review and valuable insights into these occurrences.
The abstract explains that ‘MPNs are the leading causes of unusual site thrombosis, affecting nearly 40% of individuals with conditions like Budd–Chiari syndrome or portal vein thrombosis.’ The authors state that ‘a multidisciplinary strategy is vital to accurately determine the specific subtype of MPNs, recommend additional tests, and propose the most effective treatment plan. Establishing specialized care pathways for patients with splanchnic vein thrombosis and underlying MPNs is crucial to tailor management approaches that reduce the risk of hematological outcomes and hepatic complications.’
The full paper is available HERE.