September is blood cancer awareness month

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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

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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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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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2021 international MPN patient conference videos available

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MPN patients are fortunate to have access to videos and presentations from the 12th Joyce Niblack memorial conference on MPNs which features the world’s leading MPN experts.  It was held virtually in February 2021 and explains the latest developments in MPNs around the globe.

The information is specifically presented for MPN patients.

We thank the MPN Education Foundation for making these videos available to MPN patients and their families.

Dr. Ruben Mesa & Dr. John Camoriano
Conference Dedication and Welcome
Dr. Jyoti Nangalia
MPN Molecular Biology
Dr. Tiziano Barbui
Managing ET in 2021
Dr. Richard Silver
Managing PV in 2021
Dr. Srdan Verstovsek
Managing MF in 2021
Dr. Ruben Mesa
Guidelines and Gaps in MPN
Faculty
General Q&A
Dr. Jeanne Palmer
Setting the Stage for Transplant
Dr. Krisstina Gowin
Complementary Treatments for MPNs
Dr. Susan Leclair
Learning about Labs, all about LDH,
SARS-cov2 and you
Dr. Susan Leclair
Thyroid Disorders
Dr. Jean-Jacques Kiladjian
The Future of Interferon in MPNs
Dr. Jason Gotlib
Evolving Targets for MPN Therapy
Dr. Angela Fleischman
Nutrition and MPNs
Dr. John Mascarenhas
New Drugs for MPNs
Camoriano, Leclair, Gotlib
ET Breakout – Q&A
Silver, Mascarenhas, Gowin
PV Breakout – Q&A
Mesa, Verstovsek, Deeg, Palmer
MF Breakout – Q&A

You can view the videos HERE. 

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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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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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MPN awareness day September 2020- video of patient webinar

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If you were not able to join the inspiring and informative Australian MPN Awareness Day webinar, you can watch it HERE.
The MPNAA is grateful to Professor Andrew Perkins, Professor Wendy Erber, Professor Peter Baade as well as the Leukaemia Foundation and MPN patient Helen Williams for making this event possible.
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