Anyone in similar situation? No primary, L4 and adrenal gland mets

[claudine]

Hello everyone,

My husband (52 now) was diagnosed with colon cancer metastasized to the bone last April. He'd had back pain for a while but was putting it on aging/arthritis, even though he's very active physically. Finally it got so bad that he got checked and what we thought was a pinched nerve turned out to be an adenocarcinoma in his L4 vertebrae. The hunt was on for finding the primary; markers suggested a colorectal origin. A PET scan revealed activity in the small intestine, and since he had Krohn's disease as a young adult it made sense. The inflamed section was resected and sent for pathology but no cancer was found. He had radiation (5 days, 3 weeks) for the metastasis, followed by 6 cycles of adjuvant Xelox, which resulted in terrible hand and feet neuropathy (he finished the treatment mid October but is still in a lot of pain).

Then in December he started having back pain again (it had eased after the radiation). An MRI came back inconclusive so his oncologist prescribed another PET, which showed that the L4 tumor was still active, and identified a new mass (about 5cm) in his left adrenal gland. Biopsy confirmed the colorectal origin. Nothing else on the PET. He traveled to a larger hospital (OHSU, Oregon) and received 3 Stereostatic Body radiation Therapy (SBRT) treatments for the L4 met. His oncologist told us that the adrenal met could be resected, but he would rather leave it in place for now as a gauge of the efficacy of chemo; Bret starts Folfiri/Avastin on Friday. We don't have the detailed genetic pannel in hand (will have on Friday) but we're told that he's MSS (so no immunotherapy) and KRAS-mutated.

I'm not sure what I expect from this forum, but I can't seem to find anyone with a similar pattern as my husband's. It seems that both bones and adrenal gland are relatively uncommon met sites, especially when everything else (lungs, liver, lymph nodes) appears clear. Any feedback (also on Folfiri side effects, especially in terms of neuropathy) very much appreciated!

[LPL]

Hello everyone,

My husband (52 now) was diagnosed with colon cancer metastasized to the bone last April. He'd had back pain for a while but was putting it on aging/arthritis, even though he's very active physically. Finally it got so bad that he got checked and what we thought was a pinched nerve turned out to be an adenocarcinoma in his L4 vertebrae. The hunt was on for finding the primary; markers suggested a colorectal origin. A PET scan revealed activity in the small intestine, and since he had Krohn's disease as a young adult it made sense. The inflamed section was resected and sent for pathology but no cancer was found. He had radiation (5 days, 3 weeks) for the metastasis, followed by 6 cycles of adjuvant Xelox, which resulted in terrible hand and feet neuropathy (he finished the treatment mid October but is still in a lot of pain).

Then in December he started having back pain again (it had eased after the radiation). An MRI came back inconclusive so his oncologist prescribed another PET, which showed that the L4 tumor was still active, and identified a new mass (about 5cm) in his left adrenal gland. Biopsy confirmed the colorectal origin. Nothing else on the PET. He traveled to a larger hospital (OHSU, Oregon) and received 3 Stereostatic Body radiation Therapy (SBRT) treatments for the L4 met. His oncologist told us that the adrenal met could be resected, but he would rather leave it in place for now as a gauge of the efficacy of chemo; Bret starts Folfiri/Avastin on Friday. We don't have the detailed genetic pannel in hand (will have on Friday) but we're told that he's MSS (so no immunotherapy) and KRAS-mutated.

I'm not sure what I expect from this forum, but I can't seem to find anyone with a similar pattern as my husband's. It seems that both bones and adrenal gland are relatively uncommon met sites, especially when everything else (lungs, liver, lymph nodes) appears clear. Any feedback (also on Folfiri side effects, especially in terms of neuropathy) very much appreciated!

Hi and welcome!
This must feel odd when no primary tumor is found.. I presume he has had colonoscopi? All clear there?
Best of luck with the Folfiri/avastin. Unfortunately no experience with that combo, hubby had folfox.

[claudine]

Thanks LPL for the welcome. Yes, colonoscopy was the first thing they did but it came back clear. Best explanation the oncologist came up with is that cancer likely originated in Krohn's damaged segment of small intestine, probably a very small tumor that got destroyed by immune system but had time to send cells into the blood stream first, one settled in the vertebrae and that was that.
Folfiri - probably chosen over Folfox because first chemo treatment (Xelox) already had oxaliplatin and didn't work as adjuvant chemo, unfortunately.
I hope your husband stays in remission!

[texmexflute]

Had folfiri. Side effects were controlled with pre-chemo meds. Only side effect I noticed was I lost half my hair .