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DiscussionNegative Turn in a Long Journey
Pancreatic Cancer | Last Active: Oct 1 5:03pm | Replies (102)Comment receiving replies
Replies to "@wpprescott - checking to see how you are doing... facing similar situation as in your original..."
@rockie66 Things are going OK with the trial so far, but the irony (as I noted earlier) is that my side effects and overall quality of life are worse than they were when I was grinding through 22 rounds of FFOX! Never a dull moment...
The negatives so far are that I continue to struggle with weight loss and digestion issues due to lack of appetite and fatigue, as well as a very dry mouth and lips. I did struggle with mucousitis at times when I was on FFOX so the latter side effect isn't that surprising. For appetite stimulation I have tried prochlorperazine (Compazine) and olanzapine (Zyprexa). I have my second long day of testing tomorrow and have been told there are still "other things" I can try that may help stimulate my appetite, including cannabis. On that note, does anyone have positive experiences with same (synthetic or edibles)? I can count on one hand the number of times I smoked weed in HS/college (early '80s) and I never recall the "munchies" being a part of that experience.
The positives are that I am sleeping well, have a very responsive and supportive care team at Yale Trials, and the skin rash has been well-controlled so far with Minocycline and Triamcinolone cream. It really isn't that bad/visible except on my nose. It looks a lot like a bad sunburn. The rest of my face and head (which is shaved and bald) have very small red blemishes that come and go around my face. head and neck. I apply the cream 2-3 times a day and always before bed and when I wake up in the AM, everything is almost cleared up completely. I do know the accumulated effects of Cetuximab will probably make it worse, but it is better than I expected so far.
I don't have a CT scan until Sep 19th to check for progress with the trial, but the nodule under the skin of my abdomen which is known to be malignant seems to be getting smaller. Maybe it's just a form of confirmation bias, but I am hoping I'm correct!
I am looking to connect with anyone on the same or a similar trial if you or someone you know fits that bill. I have never been a Facebook user but I did sign up so I could monitor some of the KRAS forums (including the G12D group) and it hasn't provided a lot of new information or contacts with others in my trial so far.