Bomedemstat trials in USA?

[endlessfun]

Does anyone know of trials with ET in the US. Especially Florida and East Coast. My husband has CALR ET with increasing Platelets. Failed HU. Is 85 and really doesn't want to try the shots. He has no symptoms except for elevated Platelets.

[Mazcd Partner MPNVoice]

hi endlessfun, I have found details for a trial in Florida clinicaltrials.gov/ct2/show...

[endlessfun in reply to Mazcd]

Thank you for the info. I have emailed them for more info.

[George1976]

I have ET with CALR and was told by a very experienced MPN doctor at John’s Hopkins that no meds are needed if you have no symptoms. He told me my ET with CALR was a low risk form.. The thinking is that meds can be toxic so avoid them until the disease is causing you problems. I was having symptoms of bleeding excessively at times and headaches so I have been on various meds for 8 years.

Just my experience. Please consult with an MPN specialist before going one way or the other.

[Zeppelin11 in reply to George1976]

What if your platelets are in the millions? Still no medication? I have what you have as well.

[George1976 in reply to Zeppelin11]

That’s what I was told but please don’t take my word for it. Check with your doctor. My platelets were 1.7 million initially with no meds. Since I had symptoms I started meds.

[endlessfun in reply to George1976]

Thanks for your reply. So far his Hematologist (trained with an MPN specialist) is going along with my husband's desire to wait on starting other meds. He is 85, elevated platelets about 1 million (900-1100). No other symptoms. On daily baby aspirin. Failed HU. on blood work every other week. What I've read is that his biggest risk factor is his age. Otherwise only a moderate risk. (CALR ET)