11 rounds of chemo - still pain - trying to hold out hope

Posted by maxmom @maxmom, May 28 3:22pm

Husband diagnosed in Dec. 2023 - stage 3 borderline resectable. Started 5FU - after 6 rounds and CT, PET found no positive impact other than no further spread beyond lymph nodes. On 5FU, lost 35 lbs, never had relief. Switched to Gem/Abrax - couldn't handle 3 on and 1 off so went down to every other week and 20% reduction. Feels better, gained 30 lbs, But he still experiences rib pain and stomach - definitely less often but it's still there. Is this from chemo? The tumor? We had hoped that if the tumor shrank he'd be in less pain. We won't know until next scans in mid-June what's really happening but just wondering if anyone else still experiences pain but saw positive results? Could this be the chemo vs. spread?

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sheridanb | @sheridanb | May 29 11:01am

My husband's cancer was found because of pain in his back. We assumed he had tweaked his back when kayaking or lifting weights or something so were dismayed when it was found mets to the bones along his spine. Otherwise we would not have known about the cancer as he was in perfect health... except for back pain. And as it was... because we weren't thinking cancer, it was a year later that he actually started chemo for pancreatic cancer (was first mis diagnosed, so chemo for lung cancer because also mets to the lungs and lymph nodes). I don't know if this is common, but could rib pain be cancer hitting the bones? A scan would show this I think. Dan had radiation on some of the spots along his spine, and months later had some relief from the pain. Meanwhile started chemo, so I don't know if the relief is from the radiation or the chemo. But I'm sure gabapentin has helped him with bone pain.
Sorry for what you and your husband are going through. I don't have any answers, but know when you post here that you are hoping for some kind of response. Best of luck to you both.

mayoconnectuser1 | @mayoconnectuser1 | May 30 6:39am

Maxmom,

Is he being treated at a Center of Excellence?

If not, please consider immediately changing to one, regardless of the logistics.

gamaryanne | @gamaryanne | May 30 6:45am

This could be many things, including kidney infection depending on where pain is exactly. Also could be what he is eating. Hopefully the upcoming scan, along with his labs, will give a clearer, actionable picture!