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@ncteacher

I am not a medical professional of any sort, so please take my thoughts as ideas and opinions, not facts. FYI, I'm a stage 4 patient, diagnosed in late March, and I don't qualify for any type of surgery or radiation.

My oncologist has told me that CT scans cannot "see" flat lesions that are smaller than 1.5 cm. (I've also read 1.0 cm.) I don't know about PET scans, so it would be worth asking how good the PET scan resolution is. The CA 19-9 test is a weak diagnostic tool, although it seems like physicians routinely take the test as part of their initial evaluation. Anyway, putting those two ideas together, one question for the MD could be: Could the elevated CA 19-9 result mean there is cancer activity even though the PET scan can't "see" it? You could also inquire how thoroughly the surgeon looked during the laparscopy--maybe he missed something?--but you surely don't want to insult him, and he sounds like he's under pressure due to the timeline, so step carefully there.

Re chemo, I've never had Gemzar/Abraxane, only Folfirinox, so I can't compare them. I've had 16 rounds so far, 8 of modified Folfirinox (all but one at 60 percent of the typical full dose) and 8 of modified Folfiri (no oxaliplatin, and still at 60 percent of typical dose). My first round, which was at 80 percent of typical, was awful, but since then things have gotten much, much better and more predictable. I have chemo every other week and am usually "under the weather" for three or four days, but otherwise function pretty much as usual the rest of the time. For me, Folfirinox/Folfiri has been very effective, and we are planning to continue it as a maintenance treatment for as long as possible. I know that others on this board have found less success with Folfirinox, and I'm hoping they post as well.

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Replies to "I am not a medical professional of any sort, so please take my thoughts as ideas..."

Hi there, my husband is also stage IV and in Folfirinox. After 4 rounds they did scans and showed cancer was “stable” so the plan is to stay on it every other week. He is really struggling though. Prior to chemo the pain was excruciating and that’s how he was diagnosed but been on crazy pain meds and struggles with GI issues. Would love for him to have more “normal” days. Any suggestions for managing pain, diet, fatigue or general side effects?