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February 16, 2015 at 4:31 pm #22369cherisParticipant
I was wondering if there was any info on patients relapsing after having an initial response with Ipi. I couldn’t find any official data. I figured someone here would know. Thanks knowledgeable people.
CherisFebruary 16, 2015 at 4:38 pm #66398LesliParticipant
Well that was a short celebration!
Hi Cheris, I seem to recall that last September 2014, a very exciting study came out about some long term survivors on Ipi. Perhaps someone on the forum recalls that study? I want to say there were folks out 10 years. This is exciting to Oncologists since we don’t have those numbers for PD-1 yet.
And as we know, every case is different. A quick search found these two very different examples:
Hope that helps. LeslieFebruary 16, 2015 at 4:48 pm #66399cherisParticipant
Thanks, Lesli. No, I’m still celebrating, but compiling a next plan of action if needed. I hope you are feeling better.
CherisFebruary 17, 2015 at 11:31 am #66400buffcodyParticipant
Thank you for supplying the link to the article on ipi long term success. Hard course for these two obviously, but 5 and 5 1/2 year survival and improvement is nothing to sneeze at. It also gives hope to me and folks like me who experience melanoma returning a couple of years after ipi treatments that it is not end game even for ipi reinduction as well, of course, for other modalities.February 25, 2015 at 2:17 am #firstname.lastname@example.orgParticipant
I am wondering if anyone can offer some insight into what my husband is experiencing now on ipi..4th dose was in early dec..scans in late dec showed little change in disease..confined to a couple of nodes in left groin which was same situation in sept…next set of scans in a few weeks but he now has 2 nodules..we r thinking enlarged lymph nodes in right groin..dr says he will just see him next week for his reg infusion..we are discouraged and are hoping his body is just reacting to the immunotherapy but obviously concerned it is the melanoma spreading..there is nothing to do but wait to see dr..chance they would biopsy? Even if he is lucky enough to be a responder, we know disease may progress before any response if at all..how to stay sane through all of this? Well meaning relatives have offered possibility of a hernia but we know better…February 25, 2015 at 5:18 pm #66402Catherine PooleKeymaster This is an interesting discussion. IPI has a response rate of about 15%. I think there are a few long term responders. For the question regarding the nodules popping up from Jawillett, I would ask the doctor to explore this further and get a definitive answer if it is progression or not. Your husband then has the option to go onto PD1 which has a 38% response rate for Keytruda and 32% response rate for Opdivo. Disease is best dealt with early on rather than later (if that is what is determined.)February 25, 2015 at 8:40 pm #66403mmmmParticipant This press release on long-term ipilimumab survival might be interesting: http://www.esmo.org/Conferences/Past-Conferences/European-Cancer-Congress-2013/News/ECC-2013-Press-Release-Longest-Follow-Up-of-Largest-Number-of-Melanoma-Patients-Treated-with-Ipilimumab-Shows-Some-Survive-up-to-Ten-Years ” class=”bbcode_url”> http://www.esmo.org/Conferences/Past-Conferences/European-Cancer-Congress-2013/News/ECC-2013-Press-Release-Longest-Follow-Up-of-Largest-Number-of-Melanoma-Patients-Treated-with-Ipilimumab-Shows-Some-Survive-up-to-Ten-YearsFebruary 25, 2015 at 9:41 pm #66404MikersParticipantCatherine Poole wrote:
… PD1 which has a 38% response rate for Keytruda and 32% response rate for Opdivo. Disease is best dealt with early on rather than later (if that is what is determined.)
Dear Catherine, speaking of response rate do you mean complete or partial response?February 27, 2015 at 2:59 am #66405dkmcParticipant
My husband Don was a total responder to Ipi after his first round. He was NED for 13 months. When it reoccurred his tumor was surgically removed…along with a good part of his colon and then Ipi was repeated. He has been NED since the surgery. We are at 20 months and counting! Will it last??? we don’t know but this is the longest he has been NED since his diagnosis 4/2009 so we will take it! That is just our personal experience with Ipi. Good luck to us all…KarenFebruary 27, 2015 at 4:20 pm #email@example.comParticipant Thanks Catherine and Karen for the information!
So Karen, after your husband’s 4th infusion and first set of scans (about 12 weeks from last infusion), was he NED? Did he exhibit any progression at all before he was NED?
We were told there could be some progression so this new “swelling” near his lymph nodes could be just that…a progression to which we are concerned the Dr is going to tell us that he needs to give it more time and that he doesn’t yet qualify for PD1. He is part of a trial so we are wondering if they are really going to want to make sure he isn’t an ipi responder before switching meds…If we had our way, we would switch to PD1 immediately if it is really a progression he is experiencing. Not sure if they will be able to tell if it is a reoccurrence without a scan or biopsy. Scans are set for March as part of the trial.
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