Stay on Bomedemstat or....not?

[givingITMybest]

I have E.T. and originally was on H.U., but began blooming in skin cancers which has continued and experiencing greater fatigue when I began bomedmestat, a phase two study which is now beginning stage three. My fatigue improved overall, but recently results thus far of the use of bomedemstat with E.T. and other cancers has resulted in a revised side effect list. Now, for another cancer it showed an increase in aspirgilligus in the lungs and another bleeding issue the detail of which I don't recall. I've been on bomedemstat just over two years now. I've had aspirgillgus in my lungs for over three decades but my COPD breathing tests stayed stable until two years ago when there began a decline. I'm now being treated for the aspergillus with voriconazole( not a nice drug) for three months then I will have a CT scan. The other connection I'm seeing is a year ago I landed in the emergency room with four bleeds in my stomach and top of the intestines. I was shocked, I've never had a tender tummy of any sort. So, I'm meeting with my MPN specialist to talk about the two tangential connections to my taking bomedemstat and these health events. I may likely go back on H.U or try interferon, but the fatigue I hate. I guess I'm asking for your thoughts on my situation knowing it is support I'm seeking. Namaste

[hunter5582]

My understanding is that GI bleeds are a known AE associated with bomedemstat. I had not heard of it being associated with aspergillosis or other issues with the lungs or breathing, but I expect you are more up-to-date on that than the rest of us. mpn-hub.com/medical-informa...

It may be that you cannot tolerate bomedemstat due to the adverse effects. Thank you for having the investment in treatment to try this new medication. Treatment can only move forward when people are willing to commit to clinical trials.

It sounds like you have a good plan in reviewing this with the MPN Specialist who knows your case. You do have other options. You indicate that you are considering Pegasys. Since you already know how you respond to HU, PEG may be worth consideration. Some of us respond better to PEG and find it easier to tolerate than HU. That was my experience.

Wishing you all the best moving forward and than you for being willing to enroll in the clinical trial.