Webinar: empowering conversations – with oncologist Dr Ranjana Srivastava

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The video from the Leukaemia Foundation’s latest webinar is now available.
It features Dr Ranjana Srivastava OAM, a medical oncologist, who has loads of helpful practical advice about how to communicate well with your doctor.

The webinar covers:

  • How doctors communicate with their patients
  • How to convey your communication preferences
  • Talking about your values and preferences for care
  • How to use these suggestions for your unique situation
  • Managing future planning during recurrence / progression
  • The importance of having an Advance Care Directive

The video of the webinar is available HERE.

Ruxolitinib and risk of non melanoma skin cancer

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A study published in the January 2024 issue of Blood authored by 28 haematologists and researchers throughout the UK titled ‘Outcomes and characteristics of nonmelanoma skin cancers in patients with myeloproliferative neoplasms on ruxolitinib‘ raises serious concerns that patients on ruxolitinib should be aware of the risk of non melanoma skin cancers. The study followed 90 patients (median age 73) who had developed NMSCs whilst on ruxolitinib therapy.

There is an article on the MPN Research Foundation website in the US  which contains a link to the full study HERE.

“Non-melanoma skin cancers in ruxolitinib-treated patients with myeloproliferative neoplasms (MPNs) behave aggressively, with adverse features and high recurrence. In our cohort, mortality from metastatic NMSC exceeded that from myelofibrosis,” the UK study authors report.

Ruxolitinib can be effective in reducing spleen volume and symptom burden as well as potentially prolonging survival in responding patients. “However, benefits need to be balanced against potential toxicities…” the authors suggest.

“Our study highlights the aggressive nature of NMSCs in ruxolitinib-treated patients with MPN, the importance of counseling patients about the risk of skin cancer before starting ruxolitinib, and a requirement for close dermatological monitoring on treatment.”

Optimal MF management following diagnosis of NMSC remains uncertain, according to the authors. “Stopping ruxolitinib may result in MF (myelofibrosis) symptom flare and potentially increase the risk of disease progression, and it is not yet clear whether ruxolitinib cessation (or switching to an alternative JAK inhibitor) impacts NMSC outcomes. Consequently, if a patient develops an NMSC while taking ruxolitinib, the risks and benefits of each treatment option need to be carefully weighed and discussed with the patient, acknowledging the uncertainties alluded to above, before deciding whether to change therapy.”

“Larger, prospective collaborative studies are needed to better understand NMSC risk and outcomes in ruxolitinib-treated patients with MPN, the report concludes, as are similar evaluations of NMSC risk in patients with MPN treated with other JAK inhibitors.”

 

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Optimal care pathways now available for MPNs

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An illustration of two people embracing, with the text Optimal Care Pathways for patients and loved ones over the top.

The Leukaemia Foundation and Cancer Council have just released Optimal Care Pathways for Myeloproliferative Neoplasms.

Optimal Care Pathways (OCPs) are trusted guides that describe what optimal care for a particular type of cancer should look like. They put the patient at the centre of care decisions.

Covering every step from prevention and early detection through to recovery, living with a chronic disease, or end-of-life-care, they aim to improve patient outcomes through promoting quality cancer care and ensuring that all people diagnosed with cancer receive the best care, irrespective of where they live or receive cancer treatment.

Optimal Care Pathways can guide, support and inform increased collaboration, more effective care, improved healthcare provider–patient communication and patient experience. They have been signed off by state and territory governments.

Each OCP is made up of three documents:
1. The full OCP, a detailed and technical document outlining the pathways and timelines that define optimal care for someone diagnosed with this particular type of blood cancer (for healthcare professional use);
2. A short quick reference guide which summarises the OCP (for healthcare professional use); and
3. Your guide to best cancer care, a version of the OCP specifically designed for patients, carers and their families.

Who are Optimal Care Pathways for?
The OCPs are for healthcare professionals, patients, carers, and anyone affected by cancer or involved in cancer care.
The Leukaemia Foundation advises that OCPs should be read and understood by all healthcare professionals involved in cancer care – haematologists, oncologists, radiologists, surgeons, general practitioners, allied health professionals, nurses and cancer service managers, and trainees.

OCPs for MPN patients titled ‘Your guide to best cancer care’ are available in English for download HERE.
OCPs for MPN patients in several languages are available for download HERE.*
(*click on the grey shaded box that says PDF available for download in your language.)

OCPs for healthcare professionals are available for download HERE.

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Unusual site thrombosis: literature review and insights

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Exploring the Molecular Aspects of Myeloproliferative Neoplasms Associated with Unusual Site Vein Thrombosis: Review of the Literature and Latest Insights

A paper has just been released about unusual thrombosis sites in patients with myeloproliferative neoplasms.
It includes a literature review and valuable insights into these occurrences.

The abstract explains that ‘MPNs are the leading causes of unusual site thrombosis, affecting nearly 40% of individuals with conditions like Budd–Chiari syndrome or portal vein thrombosis.’ The authors state that ‘a multidisciplinary strategy is vital to accurately determine the specific subtype of MPNs, recommend additional tests, and propose the most effective treatment plan. Establishing specialized care pathways for patients with splanchnic vein thrombosis and underlying MPNs is crucial to tailor management approaches that reduce the risk of hematological outcomes and hepatic complications.’

The full paper is available HERE.

 

 

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2024 guidelines on essential thrombocythemia

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These guidelines titled ‘Essential thrombocythemia: 2024 update on diagnosis, risk stratification, and management’ have just been released. They are a collaboration between the American haematologist Professor Tefferi and Italian haematologists Professor Vannucchi and Dr Barbui.

For a direct link to these comprehensive 2024 guidelines, see HERE.

We have also put a link onto our ‘MPN guidelines and articles‘ page.

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MPN Horizons Conference for patients 2023 – videos available

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Every year, the international MPN Advocates Network holds an MPN patient conference featuring many international MPN experts discussing the latest developments in MPN management.
The videos include:

  • New Challenges in Diagnosing MPN
  • Diagnostic Criteria for ET, PV & MF, biological aspects
  • New learnings in diagnostics, CHIP
  • How does a genetic understanding of MPNs affect prognosis for patients? Prognosis between ET, PV & MF
  • The Complexity and Combinations in Treating MPNs
  • PV – What is the current standard of treatment?
  • MF – Combinations in treatment
  • ET – The future of treatment
  • Cardiovascular risk factors in MPN patients
  • Special Problems in MPNs
  • The growing complexity of MPN mutations
  • How to talk to patients about MPN?
  • Special cases: skin cancers & thrombosis

All these videos as well as fascinating discussions about MPN advocacy and Q&A sessions are available HERE.

With thanks to the MPN Advocates Network.

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Webinar about ‘Ageing and blood cancer’ now available

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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

 

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Webinar on ‘Fear of cancer recurrence’ now available

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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.

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

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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.

 

 

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MPN experts: Roundtable series on PV

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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 therapy – HERE.

Part 3: Identifying when first-line therapy for PV might be failing – HERE

Part 4: Second-line therapy and reviewing data on Ruxolitinib – HERE

 

 

 

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