Hi Everyone!
hoping you’re all well and managing to cope with these horrible and hard days.
I was recently (June 2025) diagnosed with Indolent Systemic Mastocytosis (ISM) after loads of test, including bone marrow biopsy!
I am due to start the new clinic trial TL-895-201 for ISM at MPN clinic, Macmillan UCLH hospital in London within the next few weeks and was hoping to find/connect with someone who is going through the same thing. I understand the ISM affects 1 in 10,000-20,000 people so it may be a long shot but thought this might be the best place to try!
thank you! :)
Hi Smiler2309c67923 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I put 'TL-895-201' into the group search 
but drew a blank I'm afraid. Of course that doesn't necessarily mean that no one else is on this trial, it could just be that they haven't posted about it yet.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
