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Negative Turn in a Long Journey
Pancreatic Cancer | Last Active: Oct 1 5:03pm | Replies (102)Comment receiving replies
@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.
Replies to "@rockie66 Things are going OK with the trial so far, but the irony (as I noted..."
I just got into a Phase 1 trial called MOONRAY. It's a KRAS G12D inhibitor from Eli Lilly. Six pills by mouth each day. Some nausea and fatigue, but definitely tolerable after one week, with no mouth or skin issues.
I also continue to struggle with weight loss and digestion issues. My palliative ARNP has also recommended either prochlorperazine (Compazine) or olanzapine (Zyprexa), but not both together. I've avoided both because of the side effects I read about, but she said those are not common at lower doses. She also said Reglan (metaclopramide) can be take in conjunction with Olanzapine, but not with Compazine. Once I got my GI tract straightened out with Reglan last year, I stopped because of the potential side effects (and nasty taste), but the side effects are supposed to be mild with lighter dosing and limited time usage.
I've also struggled with extreme dry mouth, but only while sleeping. Everything seems to wake me up in the middle of the night. There are many causes, but anti-nausea meds are said to dry you out (reduce salivation), and that has scared me away from most of them. I've had some luck with OTC tablets called XyliMelts (from OraCoat) that you can put between gum and cheek tissue while sleeping. The same ARNP also recommended mouthwashes like Biotene (which I've already tried with little success), and an SLS-free toothpaste like Verve. (SLS is Sodium Laurel Sulfate, iirc). I haven't tried that yet. She also said you can make your own mouth rinse with about a quart of water, a tablespoon of baking soda, and a teaspoon of salt. I'll give that a shot this week.
ARPN said Olanzapine has also been shown to help with sleep as well as with appetite. Have you noticed any impact on drowsiness or sleep quality?
I can't do the medical marijuana route for various reasons, but I'm guessing you might recall the "cottonmouth" phenomenon from the 1980's. It may be more hindrance than help for you, but everyone is different. Wishing you the best, and hope you'll keep us updated.
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Thank you for posting. I was in the phase 1 trial. What dosage are you at?
I have the dry mouth and lips from Naliri. I sip on orange juice all day and brush my teeth every chance I get! Also using a good quality lip moisturizer/chap stick. Can’t stand to even look at any food that is dry. Applesauce with protein powder stirred in, and anything else liquid that I can hide protein powder is are my go tos.
Glad to hear they have found an antidote to the rash. That was one thing I was glad to leave behind .