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September 15, 2012 at 6:45 pm #20629Mrs_RasParticipant
Gary has only had two treatments of Ipi and the onc already wants to take him off. 😡The onc is basing this on Gary’s skin mets. He also said if Ipi was going to work there would be some indication after the second treatment. That is NOT what I’ve heard from 95% of the people on Ipi. They mostly say it’s after the treatment is over that they see real results from the treatment. He’s supposed to have a CT done early next week. And how do we go about finding another onc that’s not associated with the largest oncology team in the area??September 16, 2012 at 1:00 pm #56515LinnyParticipantSeptember 16, 2012 at 6:50 pm #56516Catherine PooleKeymaster IPI/Yervoy does take a long time to provide a response. Usually, the full course of treatment should be given before pulling someone off of it. I would just tell the doc that is your preference. Is he offering any other alternatives? Can the mets be radiated?September 17, 2012 at 2:12 am #56517benpParticipant Do you know his lymphocyte count? There does seem to be some data indicating that ALC after the 2nd injection can indicate whether a response is likely.
See the results section in the abstract ofSeptember 17, 2012 at 2:50 am #56518dkmcParticipant
HI, Well I guess I am certainly in a place to answer some of your questions. Don also was going to your oncology group. We had something happen that we knew we HAD to find another doctor & group…but you are right…how do you find another oncology doctor when this is “the group” in our area. With a very straight talk with our wonderful surgeon(who may have saved Don’s life) we found our new oncologist. She is so open & knowledgeable that we feel the mistake at the old group was our cup half full instead of half empty. If you would like to e-mail me please do. We now have to travel over to Newport News but it is sooo worth it. She also studied under Dr Grosh at UVA.
Now about Ipi – I guess you know Don took many many months to respond. Started in beginning of Nov & did not become NED until May. Often things look like they are getting worse before they get better. We never thought about stopping before the 4 doses were done. It may not work but we were going to give it our best shot. I know he was lucky but I can not( if there are no bad side effects) understand why any oncology doc would say stop after just 2 doses???
Best of luck, stay strong….Karen
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