Raising Awareness for Polycythemia Vera is Key in Increasing Overall Survival

[Manouche]

« The final point that we addressed was treatment and to see if certain treatment practices reduce the risk. We were particularly interested in interferon because we had published a study earlier on interferon belonging, myelofibrosis-free survival and overall survival. We also looked at hydroxyurea, and these are the most common first-line cytoreductive treatments, and compared that to phlebotomy only. It did look like the interferon treated patients had an overall survival that was very similar to the matched general population.

At least in this study for patients on interferon long term, there was no excess mortality from polycythemia vera, whereas the other patients who did not receive interferon, although they did not have access early mortality, they did have access late mortality, suggesting that interferon can put patients in remission and reduce morbidity and mortality from this disease to the degree that patients can have a normal life expectancy »

targetedonc.com/view/raisin...

[Hopetohelp]

Thanks for sharing

[EPguy]

Great report. It is easy to read based in part on-

"Long Term INF Results" by one of the authors.

healthunlocked.com/mpnvoice...

Some more details:

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Using age to set the risk is out of date:

<<...the risk of myelofibrosis or the cumulative incidence was almost the same between both age groups. That suggests that the current risk for modification is sub optimal in identifying patients at high risk of progression>>

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<<patients who did not receive interferon, although they did not have excess early mortality, they did have excess late mortality>> INF makes the most diff over the long term

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Good idea to follow Cornell's protocols-

<<..the median survival was on average 10 years longer at our center than it is from the National Cancer Institute data (other places)>>

From other info I've seen, I believe this care at Cornell included basic blood control (HCT) before it was common practice, with further benefits from INF.

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All ages should get early treatment:

<< I don't think there should be an age bias,>>

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But <<not all patients respond to interferon>>

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<<developing new therapies ... will require studies that really go on for a very long time>>

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To design treatments <<it's helpful to look into potential biomarkers for disease activity and biomarkers for disease-modifying modification scene with treatment>>

This is one reason getting full genomic sequencing at Dx should be useful in the future.

[Kdavie12]

Thank you 🙏

[Mardigras]

Hello Manouche,I received an email from Health Unlocked asking if I could help you because I have experience of Hydroxy. Having read your post, I don’t think you were actually seeking help at all, but here goes anyway.

I was diagnosed five and a half years ago with ET, Jak 2 +.

I was put on 500mg Hydroxy, 10 mg Lisinopril, 75mg Aspirin, 40mg Simvastatin.

I have to admit to feeling rotten most of the time and six months ago I decided that I had had enough.

I stopped the Hydroxy, the simvastatin, take 5mg Lisinopril (half) and I take two 75mg aspirin.

My platelets have risen, but I feel so much better. The Haematologist that I had couldn’t be less interested, so I am going to see how it goes. She would not prescribe Pegasus, which I would have given a try, so I will monitor my platelets and hope for the best.

Keep well.

Kind regards,

Marcia