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Negative Turn in a Long Journey
Pancreatic Cancer | Last Active: Nov 13, 2025 | Replies (106)Comment receiving replies
Thank you everyone for exactly what I expected! Insightful, thoughtful, helpful and supportive comments and ideas. And I second the kudos for @markymarkfl for the detailed drug/chemo thoughts. You are a gold mine of information and I have admired your input over the last couple years of following this forum, along with @mnewland99, @stageivsurvivor and others too numerous to mention.
A couple more details and thoughts and an update on my upcoming week. I forgot to mention that all along my PC journey I have been a CA 19-9 and CEA "non-producer". My CA 19-9 was 20 at its highest and is currently < 9. My CEA was 9.9 back at my diagnosis but dropped after I started chemo and has been in the 3-5 range for the most part since then. It did increase to 7.7 when I had my last check, which raised some concern with my oncologist. I have also had a lot of "funny" scans over time which have initially been a bit concerning only to be a blip on the screen and nothing major or consistent. I attribute that partly to my activity level--my body is always active and it seems like a lot of things that show up on scans are just inflammation or temporary but benign changes masquerading as something more sinister. As I often say "someone has to be 3 standard deviations away from the mean and it seems like that is always me!"
As I mentioned I have a biopsy of the lump on my abdomen tomorrow, I am having a CT scan Friday to check to check for changes since my "bad" scan on 5/28, and hope to hear more today about possible KRAS G12D (or pan-KRAS) trials at Yale. If the biopsy and scan confirm malignancy and there are no immediate trial option, I'm leaning towards trying Gem-Nab as opposed to more FFOX. I can always go back to FFOX if G-N doesn't work and I can also keep looking for a trial and stop chemo to start that. I meet with my oncologist a week from today and hopefully I'll have a clear plan then.
@gracect If you don't mind, I'm going to send you a DM to chat about your experiences with Yale vs. MSK. I'd love to learn more about the logistics/location of your husband's treatment at MSK.
Replies to "Thank you everyone for exactly what I expected! Insightful, thoughtful, helpful and supportive comments and ideas...."
Best wishes on that biopsy.
Feel free to DM me. Very willing to share our experience.
Since your CA19 levels are low, I was wondering if you have acinar cell pancreatic cancer or ductal cell pancreatic cancer? I have the acinar cell type and my CA19-9 levels have remained normal. My oncologist told me this is normal with the acinar cell type.
Careful with that assumption on the chemos. Sometimes, insurance covers one chemo cocktail until it stops working - so confirm you can go back if needed. Folfirinox is typically the more agressive chemo, but gem-N sometimes can give better response.
Let us know what your oncologist says. But, stay on chemo until you have another option.
Great you were on it without complications for so long.
Best in health.
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I’d recommend looking for a trial - my oncologist didn’t want me to start chemo and recommended looking - I’ve been able to defer chemo for a year by going into the RMC doublet trial (6236+9805) which has been effective so far. We do have to travel across country every three weeks as it was difficult to find a slot but it’s been worth it.