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




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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.

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Extensive MPN review series featured in ‘Blood’

The American Society of Hematology’s journal Blood, this month features a review series of articles about myeloproliferative neoplasms.
The articles describe the latest advances in the world’s understanding of  MPNs.  All except the article on ET are open access to read in full.

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2023 MPN Education Foundation patient conference videos and presentations available

This patient conference in the US titled ‘The 13th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms‘ features many of the world’s leading MPN experts.

The conference was held on 18 and 19 February 2023 and these ‘hot off the press’ presentations and videos feature the latest updates on the origin of MPNs, management of ET, PV and MF, clinical trial updates on MPN treatments and efficacy, promising developments and much more.

Videos and presentations are available at the link below.

 2023 MPN international conference videos


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Video available – forum on menopause, HRT and MPNs

An online forum was recently held in the UK focusing on ‘Menopause, hormone replacement therapy and myeloproliferative neoplasms.’
The panel included Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust, Professor Claire Harrison, who is an MPN expert haematologist, and Advanced Nurse Practitioner Claire Woodley also from Guys & St Thomas’ hospital.

This video is available with thanks to the UK’s MPN Voice which provides wonderful information to MPN patients in the UK and more broadly.

PLEASE NOTE: There were some technical issues with the sound quality during a very small part of the video.

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MPN Horizons conference 2022

Reflections on the 2022 MPN Horizons meeting, Netanya, Israel
from Ken Young, MPN AA team member

The MPN Horizons meeting was held this year in Israel and online.

It was a great success with many excellent presentations.
Ken recommends in particular watch the sessions from Medical Session 3 which feature Dr Gabby Hobbs, the MPN AA’s Nathalie Cook OAM and Dr Ruben Mesa.

Here is the link to the videos from MPN Horizons Hybrid Conference 2022

Ken Young watches on whilst Nathalie Cook presents at the November 2022 MPN Horizons Conference in Netanya, Israel.

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ASH 2022 summary of highlights

Dr Ruben Mesa, an international MPN expert provides a summary of the highlights for MPN patients from the December 2022 American Society of Hematology (ASH) annual meeting.

CALR monoclonal antibody discovered!
Of particular note is the incredibly exciting news of the discovery of a CALR monoclonal antibody which has proven very successful in the laboratory. The CALR mutation is responsible for roughly 30% of ET and MF cases.
Patient clinical trials are expected to commence in the upcoming year. A measure of the importance of this breakthrough is that the research was featured in a plenary session at the conference.
Here is a link to a video from Ann Mullaly, MPN specialist and scientist from the US,  explaining in more detail how the CALR mutation is being targeted. (courtesy of MPN Hub).

Secondly, the video below from Ruben Mesa provides an overview of this and other promising developments from ASH.
Anne Brazeau, the founder and CEO of MPN Education and Advocacy International has kindly made available this video to the MPNAA.



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Interferons in MPNs: a conversation with an MPN specialist

Anne Brazeau, the founder and CEO of MPN Education and Advocacy International has kindly made available an excellent wide ranging video about interferon use in MPNs.

  • The video showcases a presentation about interferons by Gabby Hobbs, MPN specialist and Clinical Director of Leukemia Service at Massachusetts General Hospital as well as being an Assistant Professor at Harvard Medical School.
  • Dr Hobbs discusses issues that haematologists take into account when considering interferon use in pregnancy. (35 minutes into the video).
  • Dr Hobbs also responds to a range of questions from MPN patients about interferon.

Note that while the video refers often to Besremi which is a longer acting pegylated interferon available in the USA, Europe, and some other countries, Pegasys is also a long acting interferon and Australians are extremely fortunate that it is available on Australia’s Pharmaceutical Benefits Scheme (PBS).

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September is blood cancer awareness month

September is blood cancer awareness month and an ideal time to reflect on living your best life with an MPN!

The SIMM study (Survey of integrative medicine in myeloproliferative neoplasms) found ‘an overall pattern of lower symptom burden, fatigue, depression, and higher quality of life were revealed with integrative medicine utilization’.  Integrative medicine refers to such things as yoga, aerobic activity, strength training, meditation, massages, support groups, improved nutrition etc.

To find out more about living well, we recommend revisiting this excellent webinar, organised by the Leukaemia Foundation, which features patient stories as well as outstanding presentations by:

  • clinical haematologist Cecily Forsyth who has a special interest in MPNs (commencing at 12 minutes into the webinar),
  • health psychologist Jane Fletcher whose perspective and sensible suggestions are incredibly encouraging and motivating (at 51 minutes), and
  • physiotherapist Julie Allen, herself a lymphoma survivor who provides a wealth of knowledge about how to manage fatigue and the physical impacts of blood cancer (at 1hr 39 minutes).

It is a long webinar but it is extremely informative, inspiring and we can’t recommend it highly enough.  It is available HERE.

And of course our own LIVING WELL pages contain a wealth of information for MPN patients about nutrition, meditation, maintaining muscle mass etc.


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2022 update on evolving therapy in MPNs – Dr Ruben Mesa

MPN specialist haematologist Dr Ruben Mesa has provided an extensive video update on evolving therapy in MPNs. It’s a very comprehensive overview of current US guidelines and emerging therapies.
For patients with myelofibrosis (MF), the discussion on MF therapies starts at 27.42 minutes into the video.

The MPN AA believes that this is such a promising time for MPN patients. There are a huge number of clinical trials occurring all round the world for MPN patients and many early results are encouraging.
While some of the therapies discussed by Dr Mesa are not yet approved in Australia, some may already be accessible here via clinical trials.

If you think you might be eligible for one of these clinical trials, your haematologist can provide you with more information.

Dr Mesa’s video is available HERE with thanks to MPN Education Foundation.




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