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Negative Turn in a Long Journey

Pancreatic Cancer | Last Active: Oct 1 5:03pm | Replies (102)

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@gamaryanne there are new chemos in trials being offered now. I was offered one at UCLA with the criteria that one tested positive for the cld18.2 antibody, but I have elected not to go that route as the infusion time is 8 hrs and vomiting even during infusion seems to be a pretty certain side effect. I was also told by my UCLA oncologist to avoid removal of appendix even though my largest nodule is adjacent to it as it's risky and another one will just pop up; I was convinced of this. I stopped using the gem-abraxane combo following SBRT since I didn't fancy the oncoming neuropathy and my antigen was normal. I've asked to go back on it since it kept my meager 2 nodules at bay for over 1 year; now I must have a lot based on my antigen of over 13,000. I will use the ice booties and mittens this go around to try and avoid the neuropathy. You've provided such invaluable insight to all of us with your posts that please never see yourself as a burden. We are all fighting this together and I pray the phase 3 clinical trials for 6236 are successful and possibly end early if they prove they would be promising for our community versus waiting until 2026 for the results. I hope someone in the phase 3 6236 can post their progress, if allowed.

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Replies to "@gamaryanne there are new chemos in trials being offered now. I was offered one at UCLA..."

@mnewland99 thank you for your kind words. You are right! Stage IV is just a label and many have made it past 5 years so we will too!!
As for 6236 trials, I joined an online group of 6236/9805 trial participants when I began the trial July 2024. It seems to be having incredible results for NSC lung cancer. The PDAC patients overall seem to get stability primarily, and some shrinkage. The side effects are very uncomfortable and unsightly but with phase 3 they have been prescribing drugs upfront that seem to curtail the visible effects. I was so glad to do it for 6 months as it allowed all my labs to be perfect again and physical activity a breeze. In hindsight, I may have left it too soon.
What is the rational for not removing the appendix? In one of my surgeries they removed gall bladder proactively.

@mnewland99 - came across this very informative thread as I am also dealing with newly found peritoneal mets from PDAC... do you recall what the UCLA trial targeting CLDN 18.2? Thank you!
I am currently on G/A but it hit my labwork so hard and cause anemia/fatigue. Praying for everyone in this thread!