Alcyon

Gavin,

I am Hannaha’s mother so you may have read a bit about my story in her posts here. ICCA (IDH1) diagnosed in 2018, chemo, resection, chemo again, now on Tibsovo since May of 2019. Hannah has been active on the forum and I appreciate her involvement in this community.
I have been trying to locate information on the “long tail” users of Tibsovo. My success so far with this drug makes me a very lucky individual with relatively few fellow patients. Do you know of any studies looking into shared characteristics of these patients who have successful, long tail stability and/or shrinkage of disease? I have asked this question of my doctors as well as a representative of Agios, which makes the drug. None have an answer. I know it is unlikely that in-depth studies have been done, as the FDA approval is so new, so I am looking for a broad sense of demographics, lifestyles (diet, exersize) etc. Because of your facility with medical briefs, I thought you may have seen any work on this topic.
As a side question, do you know of any way that we can access the content of these medical papers when they seem particularly interesting?

Thank you-

Alcyon

• This reply was modified 2 years, 3 months ago by Alcyon.