Looking for anyone who has IDH1 mutation

After the initial set of scans yesterday, 8 weeks into the AG-120 trial, the doctors were largely encouraged. The sobering news is that we were told there is a tumor in the lungs that has grown by 8% but we were told that all other tumors are stable and some in the liver have even shrunk. Dr. Harding at MSK has strongly encouraged her to stay on the trial based on these results, which they are considering to be “stable disease” at this point. There is some good news here but the pessimistic take is that I’m not sure we have any other option. I hate that there is growth of a tumor and she has been coughing but the rest of the news seems very good (other than swollen belly which may be accedes plus swollen liver plus other side effects and her continued recovery from the compression fracture, which seems to be largely healed; and she may also have a slight rib fracture or two that the doctors did not find significant enough to even discuss until questioned about it) and she feels good and all other blood tests are showing good signs. We are still awaiting PET Scan results and she is going for another biopsy on Friday, which is part of the trial protocol. I suppose the only logical alternative at this point may be Keytruda but none of the doctors are advocating that at this point. I wanted to report the news in case this might help anyone and, of course, if anyone has any suggestions or advice, please do not hesitate to share.

Thanks and best to all!

Sincerely,
Steven

Hi Daisy, my mother has the idh1 mutation as well. I have written a few other posts on here about her and her current involvement in a trial at Sloan Kettering for AG-120 (Agios 120). This week is her 8th week on the trial, which is the first time they do all the checkpoint scans so we hope to know more at the end of this week as to how she’s doing on the trial. I will report back as soon as I have any solid information on her status. All the best!