Second versus first wave of COVID in MPN patients

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European haematologists have been undertaking ongoing studies of MPN patients who have contracted COVID.  This study covers the second COVID wave of 304 MPN COVID cases from 39 different hematology centres.  Their findings are outlined in just released (January 2022) correspondence in the International Journal ‘Leukemia’.  Importantly, they found a relatively higher risk from COVID for patients over 70, more thromboses in ET patients and a need for permanent surveillance of MPN patients who have survived the acute phase of a COVID infection.

‘Patients of the second wave presented, compared to those of the first, with a less severe disease, including a lower degree of inflammation, leading to hospitalization in a smaller percentage of cases. Overall, the mortality rate was significantly lower, likely due to early COVID-19 diagnosis, facilitated by the greater availability of swabs than in the first wave, more efficient management of infected patients, better prepared health systems and preferential protection of older and higher-risk MPN vulnerable subjects.’

‘However, patients over 70 years still presented with an excess of mortality, particularly when associated with comorbidities and an MF phenotype. Unfortunately, no data are available so far in our series to support a role of vaccinations. The high thrombosis rate in patients with ET was confirmed, suggesting that in this MPN phenotype regimens of antithrombotic prophylaxis in addition to heparin should be explored. Also in the second wave, but to a lesser extent than in the first, the health consequences of COVID-19 protracted far beyond acute infection, suggesting careful and permanent surveillance of patients with MPN who have survived the acute phase of SARS-CoV-2 virus infection.’

The full article has been made available HERE.

 

 

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Exploring real life with blood cancer – a mind and body experience

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This excellent webinar, organised by the Leukaemia Foundation, features patient stories as well as presentations by:

  • clinical haematologist Cecily Forsyth who has a special interest in MPNs,
  • health psychologist Jane Fletcher whose presentation is incredibly encouraging and motivating, 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.

It is a long webinar but we cannot recommend it highly enough.  It is available HERE.

 

 

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October 2021 ATAGI advice for third primary COVID-19 vaccine dose for blood cancer patients

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Many of you will have noted the October 2021 advice from ATAGI which recommends a third primary dose of COVID-19 vaccine for severely immunocompromised patients. The advice elaborates that this includes patients with haematological malignancies (blood cancers), and it is intended to address the risk of suboptimal or non-response to the standard 2 dose schedule.

There is advice about particular vaccines and the timing of a third dose, which should be exactly within 2-6 months of your second dose. If you have queries, we suggest that you reach out to your GP or specialist.

 

 

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Reported incidence and survival of myeloproliferative neoplasms in Australia

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An update to the Australian Cancer Atlas was released earlier this year and for the very first time it included MPNs. This was such an encouraging development for MPN research.

Since that time, researchers and epidemiologists have been exploring MPN incidence further and a paper has just been released in the journal ‘Pathology’.

MPN AA thanks the authors for their thoughtful analysis and is proud to have been able to support this research through donations from the Australian MPN community.

Spatial disparities in the reported incidence and survival of myeloproliferative neoplasms in Australia

Due to the restrictions around access to medical journals, free access to the full article will be available until 3 November 2021. 

 

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MPNs now included in Australian Cancer Atlas

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In what we believe could be a world first, myeloproliferative neoplasm (MPN) data is now included in the latest Australian Cancer Atlas. This Atlas provides national data on how cancer diagnosis and excess death rates vary by geographical area across Australia.  This latest update incorporates details about the geographical patterns in MPN diagnoses and survival across Australia from 2007-2016.

The inclusion of MPNs is the initiative of Cancer Council Queensland, in collaboration with QUT.  The MPNAA donated $10,000 towards this initiative and wishes to thank in particular Professor Peter Baade and his team, Dr Jess Cameron as well as WA’s Professor Lin Fritschi for their dedication to enabling MPNs to be part of this important resource.

The Australian Cancer Atlas is an interactive online resource helping researchers, members of the community, medical professionals and policy makers understand how the cancer burden varies by small geographical areas across Australia. It is fascinating to see how MPNs diagnoses vary across Australia, as well as MPN survival rates.  The Atlas enables users to easily visualise those differences and offers critical insight into how the patterns of cancer and outcomes in Australia vary depending on where people live, which can be used to drive research priorities and policies going forward.

Professor Baade said that “The Australian Cancer Atlas has already proven itself to be an invaluable resource and benefit to many Australians, gaining industry, scientific and community acclaim. By updating the data contained in the Atlas ensures it remains relevant, and provides a great foundation for the next phase of development.”

MPN patient Jolanda Visser from the MPN Alliance Australia said that she was pleased to hear about MPNs being included in the Atlas.  MPN Alliance Australia’s $10,000 donation was raised through a major fundraising dinner organised by Jolanda Visser held in 2018. “Having looked at the Atlas and seeing that we can retrieve MPN stats is making me feel very good,” said Ms Visser.  “It is exciting that patients like me will be able to look at this information about MPN in their local area.” The MPNAA is keen to optimise the accuracy of MPN data, which is reliant on reporting of MPNs within each state and territory. The MPNAA will be liaising with stakeholders with the aim of maximising the integrity of this data to further inform research and health outcomes.

Co-lead on the Australian Cancer Atlas, the Distinguished Professor Kerrie Mengersen from the Queensland University of Technology said the latest editions would greatly benefit the Queensland community.  “The Australian Cancer Atlas is a shining example of what can be achieved by combining cross-institutional expertise in statistics, e-research and cancer,” said Professor Mengersen.  “This collaboration is inspiring since it not only benefits our community but also leads to new knowledge and new research.”

For more information on the Australian Cancer Atlas, please visit, atlas.cancer.org.au.
To access MPN data, MPNs are listed in the Atlas as Classic MPN.

Image from the fundraiser Charity dinner organised by MPNAA’s Jolanda Visser.

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VIrtual MPN patient conference – 20 February

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The 12th Joyce Niblack Memorial Conference for MPN patients is being held as a virtual conference on 20 February this year.
Featuring many of the world’s leading MPN experts and researchers, it is a brilliant opportunity for MPN patients to stay up to date with the latest evidence and information on MPNs.
The conference is patient focussed and free to attend. All that is required is to register.
To view videos from the conference, see HERE.

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ASH – American Society of Hematology 2020

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2020’s virtual ASH conference hosted some fascinating and ground breaking findings on MPNs.
This information is all courtesy of MPN Hub.

 

 

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When did I acquire my MPN?

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Dr Jyoti Nangalia and a team of researchers from the Wellcome Sanger institute and Cambridge University in the UK will be presenting some fascinating findings at this years virtual American Society of Hematology (ASH) meeting.

Extensive genetic mapping by the team finds that MPNs “originate from driver mutation acquisition very early in life, even before birth, with life-long clonal expansion and evolution, establishing a new paradigm for blood cancer development. Early detection of mutant-JAK2 together with determination of clonal expansion rates could provide opportunities for early interventions aimed at minimising thrombotic risk and targeting the mutant clone in at risk individuals.”

Information about this presentation is available HERE courtesy of MPN Hub.

Dr Ann Mullally’s lab in the US has recently announced similarly fascinating findings. This research which further explores the cellular origins and development of mutations giving rise to JAK2 and MPNs, provides further evidence that mutations can develop decades prior to clinical presentation of MPNs, and can arise from a single hematopoietic stem cell.

More information on this important research is available HERE

 

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Risk of inflammatory bowel disease in patients with MPNs

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The MPN Hub which launched earlier this year is “an open-access online resource, dedicated to providing balanced, credible, and up-to-date medical education in MPN.  It shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams and researchers around the world.”

MPN Hub has just posted recent research from a Danish nationwide cohort study which suggests that MPN patients are at higher risk of inflammatory bowel disease (IBD).

“The findings from this study suggest that patients with MPN are at a greater than 2-fold higher risk of developing IBD and are 40% more likely to have a prior IBD diagnosis when compared with matched controls. This association might be explained by a shared pathomechanism. Therefore, the increased IBD risk should be kept in mind when evaluating abdominal symptoms in patients with MPN; while, in IBD patients, persistent leukocytosis and thrombocytosis may indicate concomitant MPN.” MPN Hub.

The full article and journal reference are available HERE

 

 

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Swab a cheek and save a life

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The Australian Bone Marrow Donor Registry is urging Australians to consider becoming a bone marrow donor.  It’s a very simple process through its ‘Strength to Give’ campaign.

Please ask your family, friends and their friends to consider becoming a donor.

For a small number of  MPN patients, the only possibility of prolonging survival is through a blood stem cell transplant. Many other blood cancer patients also benefit from stem cell transplants.

The Strength to Give donor recruitment campaign is targeted towards younger male donors (18 to 30 years old) as young male donors typically result in better outcomes for patients and increases their overall chance at achieving a full recovery (unfortunately only 4% of the registry are young male donors). It is also important to attract donors from different ethnic backgrounds as patients are more likely to find a match with a donor from the same ethnic background.

Some heart-warming stories from donors and more information is available from the Strength to Give website at strengthtogive.org.au.

 

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