FDA Approval Summary: Ivosidenib for the treatment of patients with advanced unr
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Hi Alcyon,
It is a pleasure to meet you, although we have heard a lot about you through Hannaha’s postings. Hannaha is an amazing and wonderful voice on this board.
I looked around a bit but did not find much information for you. Here is the final article from the trial for Ivosidenib (AG-120). https://pubmed.ncbi.nlm.nih.gov/34554208/ You can look at the tables and graphs on this report to see some characteristics of survivors although I don’t think it is specific to the “long tail” as you describe it. The information is not written for laypersons, but it looks to me as if individuals in better initial health did better than those less so. It also looks as if the researchers looked to see if the individuals in the trial had other mutations, but that there was no strong finding about the impact of the presence of other mutations. At any rate, that it what I think I saw in there.
Also, we had a few folks who participated in the AG-120 trials who posted on the board at the time. I looked through their posts but did not find anyone reporting a long survival. This is not to say none were in this group, it is just that no one with that profile posted about it.
I wish I could be of more help with your question. It is really inspiring how well you are doing with your treatment – my fingers are tightly crossed that your good results are here to stay.
Regards, Mary
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
FDA Approval Summary: Ivosidenib for the treatment of patients with advanced unresectable or metastatic, chemotherapy refractory cholangiocarcinoma with an IDH1 mutation
https://pubmed.ncbi.nlm.nih.gov/35259259/
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