Had my appointment with my doctor yesterday about what to do next after this last huge surgery. The options that were given to me are consistent with what most others here with stage 3 are getting. Dr Luke’s opinion was watch and wait, ipi 10mg or trial, his personal opinion was watch and wait. He again stated the reason as ipi has shown about the same statistical numbers if you do it now or later. He did say some docs may get pd-1 off label but he doesn’t agree with doing it now. The reason is that no trial data is in for adjuvant setting. He stated that if we give you pembro and the cancer comes back is it because it didn’t work or because we used it the wrong way? There may not be enough cancer present for the drug to do it’s job and then docs and insurance may be hesitant to give it to me again. I would also lose clinical trial options because of prior treatment. I am very high risk probably about 80% of relapse. The braf drugs cleared almost all cancer from the 1 positive node but did show microscopic cells still. He said that is the paradox with those drugs they work like magic but almost 100% of the time don’t kill all the cancer. I have had a bunch of other nodes that were positive when i had my original superficial groin dissection that have all been removed by surgery. The other 6 on this surgery were clear. The one node was full of macrophages that had replaced the cancer. They dont know why but it is something to do with regression they think. So the hope is that was All of it and it has been cut out. They are going to try and laser dissect the cells that were still viable and see if they can learn anything about why those cells showed resistance. I did ask about staying on braf drugs and he didn’t think it was a good idea. I didn’t show resistance and we might need them later so he doesn’t think we should burn them. Median time to full response is about 2 months and I was on them for 4. I am going to see if my local doctor will check into pembro and see if insurance will give me that option. I also asked about ipi with leukine as there was a trial that showed that combo to be a little better response rate wise and less side effects. He agreed it would lessen side effects but most people think leukine may actually suppress your immune system and it was to small of a trial to be relevant. Last thing will touch on is he said they are writing a paper on the bacteria in your gut. He said they have evidence that people on the east coast have a higher rate of colitis than people in the midwest because of the bacteria created in different environments now if that’s not crazy! I need a scan soon since its been 3.5 months but I’m going to take a week or 2 and think about things before i make a decision if a could find a trial i think I’d look hard at that option but almost all are placebo or interferon. I have now had braf drugs so that will make a adjuvant trial that much harder to find. Long post sorry. Like always ask me questions i like feedback.
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