Crazy (but great) result from bomedemstat!

[Miriammusic]

I wasn’t going to post until next month but Monday’s bloodwork was shocking. In a good way. My platelets began at 1.5 million two months ago, when I began the trial. Last week they were down to 922 but my hematocrit was 46.4. Two weeks ago the doctor increased my dose to three pills each morning, as he was concerned about my still too high hct. My results this week were PLT 438 and my hct went down to 42! Amazed. Unfortunately, I having some really odd skin/vascular(?) side effects. This week a weird rash. I am hoping we can get it under control because the blood results are magical.

[Cja1956]

So glad to hear things are going in the right direction.

[Mazcd Partner MPNVoice]

that is a good result.

[Miriammusic in reply to Mazcd]

Thanks. I am thinking we will be hearing a lot more about this drug in the future.

[hunter5582]

Great news! Glad to hear it.

FYI - I am having some mild skin issues with Besremi. Claritin keeps it under control. I use Eucrisa for some occasional small popup rashes.

All the best

[EPguy]

Thanks so much for the personal knowledge.

Great news. Are you feeling better (other than the skin problem?)

I think PLT is the main end point is that right? But clearly HCT is working too.

Maybe you'll be able to reduce the dose once you get a longer spell of CHR.

I'm hoping to see the promised allele results, maybe at the Euro meeting in June.

[Miriammusic in reply to EPguy]

I do feel somewhat better. A bit less lethargic. I too am hoping to hear about more work with bomedemstat!

[Hopetohelp]

Great news. Hope you get the rash thing sorted. Very much appreciate you letting us know how Bomedemstat is working. Don’t hear much about it normally

[Anag]

such great news! What were you taking before Bomedemstat?

I am 57, female, ET CALR in Austria. My HCT is low to begin with due to my in born Mediterranean Anaemia. That may be a problem for me. I will discuss trying this Bom. with my hemotologist tomorrow. I hope it's available here.

I had IBS and it disappeared within a few months along with my 30 year eczema battle, just shortly after going on the AIP diet (Auto Immune Paleo). I also identified food intolerances on top of that and got rid of them. Also, pork ignites the immune system due to its high Arachidon Acids. I let go of that too. I eat lots of good fats for energy! I use best greek olive oil directly from Greece and best grass fed, organic butter. We will eat like this the rest of our lives.

Also necessary is bone broth, which I make tons of (simmered 24 hours to get the collagen). This heals the gut. I add it to all soups, stir frys, casseroles, absolutely everything. My daughter's dermatitis is gone and my husband's Psoriasis 172 as bad. No more creams! Cortisones or otherwise. Try that. The first month to 6 weeks is difficult. It is worth a try!!

Thanks so much for posting.

Anag

[Miriammusic in reply to Anag]

Thank you for those suggestions! I will look into that.

[Meatloaf9]

Hi, sounds like good news to me. Thank you for being one of the trail blazers. Please continue to keep us informed of your journey. Best to you.

[givingITMybest]

I am interested in your results as I began the trial for bomedemstat in early January. I had been on HU, but had some adverse reactions. It took awhile before my platelet numbers dropped, but once they began my platelet number dropped rapidly. In fact my number was at 95 this past Monday and I began spontaneously bruising. I had to explain to a doctor what was happening and that my kind husband was not beating me! My cancer doctor lowered the dose and within two days my platelets are up to 125, still too low, but likely will come up. I'm staying at 55 mg for now which is lower than the protocol for the study, but my doc is able to make that decision. My primary side effects have been within my intestine, but I worked with a nutritionist which has been helpful. And I have "metal mouth" which overrides my taste buds. This already has improved at the lower dose. My fatigue level is much better with bomedemstat than when I was on HU. By the way I have E.T. with positive Jak2 mutation. I'll be watching for your posts as you move through the study, thank you for posting. Marie in Seattle

[Miriammusic in reply to givingITMybest]

Hi Marie! It is exciting to "speak" to someone else on bomedemstat! My PLT last week were within normal limits for the first time ever and I am on 40 mg. So, we will see what this week brings. I am also bruising. I was extremely concerned about any GI effects as I suffered greatly while on Peg, which is known to be a driver of GI issues. So far, I am okay on that front. I am sorry you are dealing and I hope that it resolves quickly for you. I am also feeling less fatigue. Fingers crossed for us both. Thank you for posting! Miriam

[Paul1993et]

Thanks for sharing the experiences. I have been using Pegasys for 6 years with the necessary side effects. As soon as Bomedemstat is available in the Netherlands (possible in a study context), I want to switch. Regards Paul (ET JAK2+)

[givingITMybest]

Miriam, I'm wondering if you are still on bomedemstat and how you're feeling about it now. I've had some health issues which are concerning and might be related to using bomdemstat and I'm weighing the possibility of using interferon. That brings a different set of side effects and issues with travel etc. anyway, i hope your journey is continuing in a positive way.

[Miriammusic in reply to givingITMybest]

Hi!

No. I am no longer on the bomedemstat. I gave it a good 8 months or so on the trial but the adverse effects were just too debilitating for me. Are your doctors convinced that your health issues are related to the drug? I have been on Besremi now for the past 6 months or so. I was on peg before that. Despite the GI effects I suffer, I still feel that interferons are the way to go. For now at least. There are so many new things coming down the pike for us! And I travel quite often with it, so don’t let that stop you!

[givingITMybest]

THANKYOU for your response. My doctors are not convinced there is a relationship between the bleeding I had a year ago in my stomach. It was shocking to me given I’ve never had any issues before. And while I’ve had aspergillosis in my lungs for years it only began colonizing two years ago and my breathing has deteriorated. I started the bomedemstat two years ago. My doc is checking the price for besremi. If not then I’ll try peg. Take care fellow traveler