Clinical Trial PV

[Miriammusic]

Hello all. Haven't posted here in a while. My background is 57, female, PV for about 8 years. Platelets were well over a million initially. Treating on Peg Interferon for 3 years with numbers well under control, however rotten IBS side effects from the Peg. My dosage is 45 mcg weekly, never increased it as that seemed to work for me. My Hem/Onc is recommending a clinical trial they are doing here (Miami) at the University of Miami with IMG-7289. Has anyone heard of this drug or have any experience? I would love to stop the peg. Thanks in advance.

p.s. As an aside, I have had both vaccine shot and the third, booster.

Miriam

[JaneWayne]

It's Bomedemstat, an LSD1 inhibitor, which I heard shows promising preliminary results in Myelofibrosis, because it seems like it also reduces allele burden. Don't know much about it in PV though, but I guess it will work in a similar way?

[Miriammusic in reply to JaneWayne]

Thank you! I’ve been looking it up as well. Interesting. We wil see if he accepts me into the trial.

[Mazcd Partner MPNVoice]

hello Miriam, you can find all the details for the trial here:

clinicaltrials.gov/ct2/show...

best wishes, Maz

[Miriammusic in reply to Mazcd]

Thanks Maz. I did find that site as well. Was wondering if anyone had any personal experience or had heard anything good or bad about it, but maybe it is still too new. It will be interesting to see what the doctor says when I meet with him. Fingers crossed. 😀

[ainslie]

I don’t know much about that trial, have you thought about trying Ruxulitinib/Jakafi, I am on it for P.V. , typically much less sides than Peg and very good for controlling counts. So far it is believed it does not have disease modifying qualities though.