Thrombosis in MPNs – a retrospective German study

A German study has just been released which looks back at arterial and venous thromboembolic complications in 832 patients with Myeloproliferative Neoplasms (MPNs).

This study aims to add some additional data to what is currently quite limited information about the most common sites, incidences, and risk factors of MPN-associated arterial and venous thrombotic embolisms (blood clots).

A relatively high incidence of MPN-associated blood clots was observed in this retrospective study.
The most frequent arterial sites were strokes and transient ischemic attacks.
The most frequent venous sites were deep vein thrombosis (with or without pulmonary embolism) and splanchnic vein thrombosis.

Patients with polycythemia vera had a significantly higher risk of a blood clot than the other MPN subtypes whereas patients with a CALR mutation had a significantly lower risk compared with JAK2-mutated MPN patients.

The full study is available HERE.

If you’d like to know more about blood clots, how to prevent them and also how to recognise them, further information is available on our MPN AA website  HERE.

(Pictorial courtesy of ‘Stop the Clot’)

Share to:

Webinar about ‘Ageing and blood cancer’ now available

The Leukaemia Foundation has provided a very interesting webinar for blood cancer patients about ageing and blood cancer.
The full video of the webinar is now available HERE.

The guest speaker was Dr Ranjana Srivastava OAM

Dr Srivastava is an internationally renowned oncologist, Fulbright scholar and award-winning writer. She is a recipient of the Medal of the Order of Australia for her contribution to the field of doctor-patient communication. She specialises in the care of older patients with cancer.

The webinar covered:

  • Key medical considerations
  • Being proactive in your own health care
  • Promoting health & wellbeing
  • Where to find information & the help you need
  • Planning future care needs & end of life considerations


Share to:

Myelofibrosis drug Momelotinib approved by the US FDA

Here is an Australian news item about the US FDA approval of Momelotinib, a new drug for Myelofibrosis. This is significant as there are few treatment options for those with myelofibrosis, and this is another option for those for whom other therapies are unsuitable. We would love to see it made available to Australian patients in the future.



Share to:

Taiwanese study on incidence of PV

A study has been released on the incidence of polycythemia vera in Taiwan for 2016-2017.
This report is of interest due to its large sample size of 2647 PV patients and because it covers a wide array of information, including treatments and mortality figures (although noting that interferon treatment was not readily available in Taiwan in 2016-2017).

In the Taiwanese study, PV incidence rates were estimated to be 2.41 and 2.65 cases per 100,000 people in 2016 and 2017, respectively.

In Australia, the reported incidence of PV from 2007 to 2016 was 1.4 cases per 100,000 people. This is based on Australian state cancer registry data, substantially lower than Taiwan and several other countries. It is suspected that in Australia, not all PV was being reported during that period. This is likely due to some inconsistent reporting practices in states and territories as well as bone marrow biopsies not always being undertaken. (A bone marrow biopsy diagnosis is automatically reported to cancer registries.)

Of further interest is that this Taiwanese study compares PV incidence and prevalence data from other countries. The rate of PV in the USA is much higher than in other countries.  This study will be useful for Australian researchers when comparable Australian data becomes available later in 2023.

The study concludes …..

‘This nationwide cross-sectional study provides a snapshot of the real-world clinical landscape of PV in Taiwan. This study reported a number of patient characteristics that were found to be different to the Caucasian populations reported in previous studies, which may provide some evidence that warrants further investigation into the genetics of PV among racial groups. This study also reported several similarities and differences of treatment patterns compared with other countries reported in previous literature.’

The full article is available at Real-world patient characteristics and treatment patterns of polycythemia vera in Taiwan between 2016 and 2017: a nationwide cross-sectional study

Share to:

Webinar on ‘Fear of cancer recurrence’ now available

The Leukaemia Foundation runs webinars for blood cancer patients. The latest is titled ‘Fear of cancer recurrence’, and also deals with the fear of progression, which is more relevant in the case of MPN patients.

It is presented by clinical psychologist Dr Charlotte Tottman and is very informative.
It is now available to watch HERE.

Share to:

MPNs and inflammation


Image: Visual abstract shows overlap between MPNs and chronic inflammatory disease.

An interesting perspective on MPNs from respected US haematologist and researcher, Dr Angela Fleischman and her colleague was recently published.

The article highlights the overlap between MPNs as cancer and/or chronic inflammatory disease.

‘….. In addition to elevated blood cell counts, MPN typically presents with increased inflammatory signaling and inflammation symptoms. Therefore, while being a clonally derived neoplasm, MPN has much in common with chronic non-cancerous inflammatory conditions, such as rheumatoid arthritis, lupus, and many more. MPN and chronic inflammatory disease share similar chronicity, symptoms, dependency on the immune system, environmental triggers, and treatments.’

The article highlights the similarities between MPNs and chronic inflammatory disease, arguing that ‘while MPN is classified as a cancer, its behaviour is more aligned to that of a chronic inflammatory disease.’
‘We propose that MPN should inhabit a fluid/spectrum between auto-inflammatory disease and cancer.’

The article is available in full HERE.

Share to:

Polycythemia vera: 2024 update on diagnosis, risk-stratification and management

MPN specialist haematologists, the USA’s Ayalew Tefferi and Italy’s Tiziano Barbui have just released a very extensive overview of polycythemia vera.

The overview is detailed and includes:

  • an important update that recognises interferon as a first line treatment option along with hydroxyurea, as well as much discussion of the latest research into treatment options,
  • advice on pregnancy management in PV patients,
  • a detailed explanation of the genetic landscape and potential implications,
  • discussion of research on life expectancy,
  • and much more.

The article appears in the American Journal of Hematology and is open sourced and can be accessed HERE.

If you’d like to see more articles on polycythemia vera, our guidelines page can be accessed HERE.



Share to:

MPN experts: Roundtable series on PV

MPN specialists  Professor Claire Harrison, Guy’s and St Thomas’ NHS Foundation Trust from the UK, Professor Jean-Jacques Kiladjian, Saint Louis Hospital, Paris,  and Alessandro Rambaldi, MD, University of Milan have collaborated to provide an up to the minute roundtable series on management of polycythemia vera (PV). (Courtesy of the Oncology Learning Network).
Each video includes an accompanying transcript.

Part 1: Hematocrit control and cardiovascular assessment – HERE

Part 2: Aims of treatment and choice of appropriate first-line therapyHERE.

Part 3: Identifying when first-line therapy for PV might be failingHERE

Part 4: Second-line therapy and reviewing data on RuxolitinibHERE




Share to:

Questionnaire: patient awareness of blood clot risks

The International Society on Thrombosis and Haemostasis (ISTH) is conducting a survey to find out more about patient awareness of cancer-associated thrombosis (blood clots) and how to help prevent and/or identify blood clots if they occur. The ISTH is keen to obtain feedback from patients from Australia and New Zealand as there has been a low response rate to date.

As MPN patients need to be vigilant about blood clots, you may wish to add your views.  Responses are anonymous and the questionnaire takes less than five minutes to complete.

The ISTH advises that ‘Patients with cancer have a high risk of blood clot formation in their veins or arteries due to the cancer itself and anti-cancer treatments. Patient awareness of these complications is key for prompt recognition of symptoms and signs, risk factors, timely referral to hospital for diagnosis and treatment, as well as for informed discussion with doctors about use of blood thinners for prevention.’

‘This questionnaire is intended for patients with cancer and aims at assessing their knowledge and satisfaction about the information received by health-care providers on the potential risks of cancer-associated blood clots and use of blood thinners.’

The survey can be assessed via the link below.


Share to:

PV – hematocrit control and cardiovascular assessment

A recent presentation from MPN specialists Professor Jean-Jacques Kiladjian, Saint Louis Hospital, Paris, and Professor Claire Harrison, Guy’s and St Thomas’ NHS Foundation Trust from the UK discusses the importance of maintaining hematocrit control in patients with polycythemia vera (PV) as well as monitoring cardio-vascular health.

The discussion, part 1 of an expert roundtable series, is wide ranging and covers the risk factors for patients with polycythemia vera.
Of particular interest is the manner in which cardiovascular health is treated by Professor Kiladjian’s team in Paris.

Claire Harrison: “Jean-Jacques, we’ve recently been looking across some PV patients and thinking about how do we do cardiovascular risk stratification and assessment. I found out that we do this in a slightly different way, and I think you do it in the best way, so tell us how you do that in Hospital Saint-Louis.”

Jean-Jacques Kiladjian: “I’m not sure it’s better, but, yeah, it’s different. Well, we have a quite aggressive and proactive attitude regarding cardiovascular assessment of all patients with PV regardless of age. Obviously the older they are, they’re usually already followed by a cardiologist sometimes or they already had some cardiovascular events.

But even in younger patients with absolutely no history of cardiovascular events, we frequently refer them to a cardiologist, not any cardiologist, but a cardiologist that knows what we are looking for, that these patients are at high risk of cardiovascular problems in the future, that they will be followed for decades and we need this proper assessment.

At least an echocardiogram, doppler of arteries, peripheral arteries, is performed. We ask to perform that for almost every patient at baseline and then regularly every 2 to 3 years in patients without any risk factors, more frequently if needed. So yes, we have a quite very proactive attitude against these additional factors because we also noticed that—and maybe this is a field for the future as Alessandro said—that it’s not exactly maybe the same risk factors for arterial versus venous thrombotic events.

Maybe some characteristics of the disease, of the patients, may predispose more to arterial events that are more dangerous for the patients like myocardial infarction, stroke, et cetera, and these risk factors may be different. And the cardiovascular, let’s say landscape of the patient at baseline is very important to avoid and to prevent these arterial events.”

The full presentation with transcript is available HERE.

Share to: