New study: Early treatment with interferon can delay myelofibrosis

Posted by eferret @eferret, 1 day ago

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For Early MF and JAK mutation

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Do you think it is for ET reasonable as well to take interferon?

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Profile picture for birgitr @birgitr

Do you think it is for ET reasonable as well to take interferon?

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@birgitr Important question, and no one really knows. The study above indicates that it may not work very well for patients with the more rare CALR mutation. The trade off between side effects and benefits of interferon may not be worth it for some patients. Research goes slowly because our disease is rare, and there are fewer of us to enter trials and studies.

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Profile picture for nohrt4me (Jean) @nohrt4me

@birgitr Important question, and no one really knows. The study above indicates that it may not work very well for patients with the more rare CALR mutation. The trade off between side effects and benefits of interferon may not be worth it for some patients. Research goes slowly because our disease is rare, and there are fewer of us to enter trials and studies.

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@nohrt4me Thanks you so much for your response 🙏. I was assuming that for example Ropeginterferon has less sideeffects. Do you know more about it and have you ever taken those meds by yourself ( sorry for my low level of English I am living in Germany 😅)

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Profile picture for birgitr @birgitr

@nohrt4me Thanks you so much for your response 🙏. I was assuming that for example Ropeginterferon has less sideeffects. Do you know more about it and have you ever taken those meds by yourself ( sorry for my low level of English I am living in Germany 😅)

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@birgitr No, I have not taken any of the interferons. In talking with other ET patients, it seems that ropeginterferon has fewer side effects than Pegasys. Older people (over age 60) often stopped Pegasys because it caused depression. Those currently taking Besremi (ropeginterferon), seem to be doing well with it. In some parts of Europe, the standard protocol was for those under age 40 to receive interferon, which does not cause birth defects, and for those between 40 and 60 to have a choice between interferon and hydroxyurea. Those over age 60 were usually steered toward hydroxyurea. But since Besremi became available, that may have changed. Is it more widely available in Germany?

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Profile picture for nohrt4me (Jean) @nohrt4me

@birgitr No, I have not taken any of the interferons. In talking with other ET patients, it seems that ropeginterferon has fewer side effects than Pegasys. Older people (over age 60) often stopped Pegasys because it caused depression. Those currently taking Besremi (ropeginterferon), seem to be doing well with it. In some parts of Europe, the standard protocol was for those under age 40 to receive interferon, which does not cause birth defects, and for those between 40 and 60 to have a choice between interferon and hydroxyurea. Those over age 60 were usually steered toward hydroxyurea. But since Besremi became available, that may have changed. Is it more widely available in Germany?

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@nohrt4me Right now it isn’t available for patients with ET only for those with PV nevertheless particularly the research of the Mayoclinic is closely observed and the hope is that it could change the future treatment.

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Profile picture for nohrt4me (Jean) @nohrt4me

@birgitr No, I have not taken any of the interferons. In talking with other ET patients, it seems that ropeginterferon has fewer side effects than Pegasys. Older people (over age 60) often stopped Pegasys because it caused depression. Those currently taking Besremi (ropeginterferon), seem to be doing well with it. In some parts of Europe, the standard protocol was for those under age 40 to receive interferon, which does not cause birth defects, and for those between 40 and 60 to have a choice between interferon and hydroxyurea. Those over age 60 were usually steered toward hydroxyurea. But since Besremi became available, that may have changed. Is it more widely available in Germany?

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@nohrt4me BTW Are there any studies about the impact of nutrition and sports on ET on the market? I haven’t ever read about it.

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Profile picture for nohrt4me (Jean) @nohrt4me

@birgitr Important question, and no one really knows. The study above indicates that it may not work very well for patients with the more rare CALR mutation. The trade off between side effects and benefits of interferon may not be worth it for some patients. Research goes slowly because our disease is rare, and there are fewer of us to enter trials and studies.

Jump to this post

@nohrt4me What do you suggest how to handle the LDL cholesterol level. Is a number under 75 too ambitious or reasonable?

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Profile picture for birgitr @birgitr

Do you think it is for ET reasonable as well to take interferon?

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In studies, Besremi has been successfully used for ET. It has been shown to reduce the allele burden and reduce the risk of thrombotic events.
https://www.targetedonc.com/view/ropeginterferon-alfa-s-supplemental-bla-moves-on-as-pdufa-date-issued
https://www.oncnursingnews.com/view/ropeginterferon-alfa-2b-effective-in-phase-3-essential-thrombocythemia-trial
So it is possible it could be approved in the next year.

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Thank you so much for sharing this information, unfortunately in Europe is no process of approval ahead. Some sources assume that after August 26 it might be possible that this process may start in Europe as well. Needless to say, Depending on a positive assessment in the states. However there is realistically no chance to get access to the med here in the near future.

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