Study participation opportunity: I have been... - MPN Voice

MPN Voice

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Study participation opportunity

givingITMybest profile image
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I have been offered the chance to participate in a phase 2 study to assess the safety, efficacy, and pharmacodynamics of IMG-7289( bomedemsat) for patients with essential Thromboycytosis. I believe it is already approved for people with PV, but I could be wrong about that. In a nut shell this drug helps stop "the bad guys" from multiplying and increasing platelets.

So, my questions have you participated in studies and how was the experience for you? It is about a 6-7 month long study and does require going in every 2 weeks for bloodwork etc.

Thanks for any guidance you might provide me as I mull this over.

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givingITMybest profile image
givingITMybest
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Sam2022 profile image
Sam2022

Good to hear you have the opportunity to participate this ET oriented medicine trial. Hope it becomes the first FDA approved medicine for ET. I don't have this opportunity 😕. What is your platelets number? Please let us know how does platelets respond this medicine. Thanks. Good luck

givingITMybest profile image
givingITMybest in reply to Sam2022

Before treatment my platelets had reached 1,362,000. Now they are in the normal range. I'm having greater difficulty on HU and may be shifting to something different. Or I'll participate in this study and then work with the doctor on what next to try.

Sam2022 profile image
Sam2022 in reply to givingITMybest

thanks and wish you well on the trial.

hunter5582 profile image
hunter5582

I believe Bomedemstat is still in clinical trials for both PV and ET. It sounds like a promising option from what I have heard. I don't know much about it and would be interested to know what you learn.

"This phase II trial studies the side effects and how well bomedemstat works in treating patients with essential thrombocythemia or polycythemia vera that has not responded adequately to standard therapies. Bomedemstat, is a new oral (taken by mouth) medication that works by turning off the activity of an enzyme called LSD1 (lysine specific demethylase 1) which is present at low levels in cells of all people. High levels of LSD1 inside the abnormal stem cells of essential thrombocythemia or polycythemia vera patients are believed to block the cells from becoming mature cells that function normally; instead, the abnormal cells continue to be made. This, in turn, lowers the abnormal red cell and platelet counts seen in patients with essential thrombocythemia or polycythemia vera."cancer.gov/about-cancer/tre...

clinicaltrials.gov/ct2/show...

Kudos to you for being willing to consider participation in the trials. This is the only way we will expand treatment options for MPNs.

Please do let us know what you learn.

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