CS Warrior Shares his Success with Ivosidenib
Hello my CS brothers and sisters! I wanted to tell you a story about my journey which might help some of you. Here are some details:
–diagnosed in Feb 2017, Grade 1 pelvic CS, spread widely on and around the acetabulum. Offered a hemipelvectomy but refused.
–May 2017 started proton radiation at what is now California Protons in San Diego, which puts me into complete remission for 18 wonderful months.
–January 2019, PET shows recurrence in hip and spread to lung; VATS surgery removes two nodules in a wedge, from right lung. Another (cryo) surgery kills off some activity in hip. Stage 4 and Grade II confirmed.
–February 2020, DNA testing of lung tumor which was removed, shows not compatible with any immunotherapy, but does have IDH1 mutation. Begin Tibsovo drug, an IDH1 inhibitor, clinical name ivosidenib.
–August 2020, six months into drug, 2 CTs (hip/chest) + MRI show cancer has stopped (“stable disease”) in all locations; talk to clinical trial chief about his 20 CS patients on Tibsovo and learn that after 1-2 years on the drug, some have gone into partial remission. He thinks my positive 6 month results might put me in that group. This is not yet published, but huge news, the first time any IDH1 drug (there are two available now) has been shown to move people with CS beyond stable disease. Note: I am not in that trial but am taking the drug independently. It is not FDA approved for CS, but for AML (leukemia, sarcoma’s cousin), but docs can prescribe it for CS, as mine did, as long as the tumor expresses the IDH1 mutation, **which 50-70% of CS tumors do.**
My goal is simple: to survive pelvic CS without the hemipelvectomy. I am 3.5 years in and so far I am doing it. If the drug had been available earlier, I would have taken it immediately after proton radiation, when I was in CR. In my opinion (not as a medical doctor of course), Tibsovo might become a blockbuster drug for the 50-70% of CS patients who qualify, via DNA tests. I am not saying this is for everyone, but I encourage you to talk to your docs to see if any of this might help you. Good luck and blessings to all……David