Bomedemstat trials

[myllo]

Hi everyone, I haven’t posted for a while as I’ve been trying to ignore this condition! Calr positive ET. I’m terrified of going back on Hydrea due to intolerable side effects and my very understanding MPN specialist nurse has been monitoring me.

Sadly, my platelets are creeping up , lately to 845 and I’m now wakening during the night with tingling legs and palpitations . Don’t know, but suspect , the cause may be the high platelet level .

My question is , does anyone have knowledge/experience of Bomedemstat? It’s an Lsd1 inhibitor and recent phase 2 clinical trials showed excellent platelet level reduction in ET Calr+ patients like myself. Guys hospital was taking part.

I’m not due another hospital appointment for 3 months but am worried about my symptoms and wondering what to do! Sorry this is so longwinded. Thanks for reading.