More benefits of exercise

/in , , /by

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.

  1. Some practical easy to implement advice  from The Conversation
    ‘Five ways to make your daily walks even more beneficial’. 
  2. Recent findings from researchers at Stanford university, posted by MPN haematologist and researcher Dr Ann Mullally. It is a video interview (with transcript) from PBS News in the US.
    How exercise may be the ‘most potent medical intervention ever known’.

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.

Share to:

Patients with CalR mutation – promising ASH update

/in , , /by

The American Society of Hematology’s December 2024 conference included developments in treatments for MPN patients with the CalR mutation. A range of Australian and international immunotherapy research is underway and some treatments are already in clinical trials. It is too early to present results.

A fascinating video about CalR treatment research is linked below.
In the video, Drs Alex Rampotas and Zoë Wong explain that there are already specific immunotherapies being trialled against the CalR mutation, all of which may well be effective.  They specifically mention a ‘B specific T cell engager’ and ‘a blocking antibody against it’.

However their collaboration is about a third type of immunotherapy option, a novel second generation CAR-T cell therapy. They advise that CAR-T is the ‘strongest immunotherapy so potentially  ……. able to overcome some of the immune suppression of myelofibrosis and directly eliminate the malignant stell cells.’

The full video is 8 minutes long, unfortunately with background noise.  However if you have the CalR mutation, watching the video will give you a Christmas present of great promise!

https://www.vjhemonc.com/video/qsoln_mbhbk-development-and-evaluation-of-a-first-in-class-car-t-therapy-against-calreticulin-mutant-neoplasms/

Share to:

Ruxolitinib available for some PV patients? PBAC call for submissions by 29 January 2025

/in , , /by

In March 2025, Australia’s Pharmaceutical Benefits Advisory Committee (PBAC) will consider an extension to the existing listing of Ruxolitinib (known as Jakavi®) onto the Pharmaceutical Benefits Scheme (PBS). The extension sought will be for the treatment of adult patients with PV who are resistant to or intolerant of hydroxycarbamide (hydroxyurea).

NOTE: CLOSING DATE FOR PATIENT INPUT – 29 JANUARY 2025

To help the Government in its considerations, PBAC is taking consumer comments until 29 January 2025.
* See below for advice on making a submission.

The MPN AA is supportive of ruxolitinib being available on the PBS for PV patients. It would provide another treatment option when first line therapy fails. Thanks to the MAJIC-PV trial conducted in the UK, Ruxolitinib has now been established as a viable second line treatment option for PV.

For more information please see our News post about the Majic-PV trial.

*Next steps if you’d like to make a submission

Making a submission to the PBAC is a way for PV patients to have a voice by explaining how having access to this treatment could impact on their own quality of life.

If you follow the instructions below you will be able to make your comments via a simple process.

  1. To comment for the  2025 PBAC meeting, start by clicking on this LINK.
  2. On Page 2, enter your name and contact details and select the category that best describes your reason for input, ie:
    – Individual who would like to access the medicine to treat own health condition
    The drug you are commenting on is ‘Ruxolitinib Jakavi®.
    You will see that this is a ‘Resubmission to request a General Schedule Authority Required (STREAMLINED) listing for the treatment of adult patients with polycythemia vera (PV) who are resistant to or intolerant of hydroxycarbamide (hydroxyurea).’ This is because the drug company unsuccessfully sought approval in 2019. However as more results are now available from the MAJIC study, the pharmaceutical company is resubmitting its application.
  3. On Page 3, provide your input by answering the questions in the free text boxes OR by attaching a PDF or Word file at the bottom of the page.
  4. On Page 4, please declare any conflicts of interest relevant to the responses provided in Pages 2 or 3.
  5. When you have completed the form, select ‘Submit Response’ on Page 5. You will be sent a confirmation receipt and link to a PDF copy of your response to the email address you provided on Page 2.

If you’d like any support in making your submission, you can contact the Department of Health at HTAconsumerengagement@health.gov.au or watch one of their facebook Q&A recordings HERE.

Share to:

Message for patients taking anagrelide

/in , , /by

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

Do not stop using anagrelide suddenly without checking first with your doctor.  Rather you may need to slowly decrease your dose before stopping it completely. Stopping suddenly will cause the platelet level in your blood to increase quickly. It should be noted that there is risk of thromboembolic events during this rebound phase which may lead to potentially fatal thrombotic complications, such as cerebral infarction. Platelet counts should be monitored closely when anagrelide is ceased.
The relevant page of our website has been updated, as has the printable PDF treatment document Anagrelide (in English).
We will update the other languages as promptly as possible, hopefully within a couple of weeks.

 

Share to:

Inflammation and MPNs

/in , , /by

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.

 

Share to:

MPN patient conference videos available

/in , /by
The videos and presentations from the inspiring MPN Horizons 2024 conference in Warsaw, Poland, are now available.
The conference shared the latest advancements in MPN research, treatment, and advocacy from a range of MPN experts.
Two Australian researchers David Ross from South Australia and Belinda Guo from Western Australia were amongst the presenters.  We have linked to a few of the presentations most immediately relevant to MPN patients:

ET

PV
  • State of the Art in PV
    Jean-Jacques Kiladijan (Virtual) – Video
  • Pipeline for PV
    Susanne Isfort  –Video, PDF
MF
And if you’re interested in research and future MPN drug treatments, the rest of the videos and presentations are available to watch HERE.
Share to:

Pegasys® delivery update for regional patients

/in , /by

The company delivering Pegasys®, JustMeds, has advised that they are now able to deliver Pegasys® to regional patients in cold chain validated shippers.

These shippers are specially made to keep your Pegasys® between 2-8 degrees for 96 hours.

The shippers need to be returned for your next delivery and the instructions for their return are on the box – see photo below.

And just a reminder that Pegasys® for all Australian patients can now be ordered and reordered online at
https://www.justmeds.com.au/send-your-script

         

 

 

Share to:

Pegasys: new way for Australians to order via online link

/in , , /by

The company dispensing and arranging delivery for Pegasys® has set up an online ordering link to speed up the ordering process for Australian patients.

This should save patients time and effort and enable patients in Australia who need their Pegasys urgently to get through to the dispensing team.

The link to order can be accessed HERE.

Share to:

Additional genetic mutations in MPNs: impact on prognosis

/in , /by

An important study of genetic mutations in MPNs and their impact on prognosis has just been released in ‘Leukaemia’, titled “Characterization of myeloproliferative neoplasms based on genetics only and prognostication of transformation to blast phase.”

The authors state “By conducting a thorough genetic analysis, we’ve developed a model that relies on 12 genetic markers to accurately stratify MPN patients. The model can be simplified into a decision tree for routine use.”

“Our data suggest to perform a broader genetic screening at diagnosis and also at clinical progression, as driver mutations may change and the MPN-driver mutations present at diagnosis may disappear.”

Their conclusion is “Consequently, expanding genetic analysis beyond JAK2, CALR, and MPL at diagnosis is crucial for accurate MPN classification, early high-risk patient identification, and timely intervention.”

This important study can be freely accessed HERE.

 

 

Share to:

Pegasys® patient ordering information

/in , /by

We thought it might be useful to provide a direct link to the patient information for ordering Pegasys® – see below.

Please note that there is currently an issue with the phone number provided on the form.
If you need to call as part of your ordering, please use the following number for now.
02 5850 0794

PATIENT INFORMATION FOR ORDERING PEGASYS®

Share to: