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

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Claudine
Posts: 21
Joined: Tue Mar 12, 2019 2:41 pm
Facebook Username: Claudine Tobalske

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

Postby Claudine » Wed Mar 13, 2019 5:04 pm

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!
Wife of Dx 04/18 (51 yrs old then)
No primary found, lytic tumor L4 vertebrae, CEA 10
Radiation 04/18
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/17 to 10/18
5.3 cm hypermetabolic left adrenal mass 01/19
SBRT L4 02/19
Folfiri + Avastin
CEA 58 03/15
CEA 17 03/29
CEA 10 04/12
CEA 6.4 04/26
CEA 5 05/10

User avatar
LPL
Posts: 595
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

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

Postby LPL » Wed Mar 13, 2019 5:44 pm

Claudine wrote: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.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

Claudine
Posts: 21
Joined: Tue Mar 12, 2019 2:41 pm
Facebook Username: Claudine Tobalske

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

Postby Claudine » Thu Mar 14, 2019 10:02 am

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!
Wife of Dx 04/18 (51 yrs old then)
No primary found, lytic tumor L4 vertebrae, CEA 10
Radiation 04/18
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/17 to 10/18
5.3 cm hypermetabolic left adrenal mass 01/19
SBRT L4 02/19
Folfiri + Avastin
CEA 58 03/15
CEA 17 03/29
CEA 10 04/12
CEA 6.4 04/26
CEA 5 05/10

User avatar
texmexflute
Posts: 9
Joined: Mon Dec 31, 2018 9:59 pm
Location: Dallas, Texas

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

Postby texmexflute » Thu Mar 14, 2019 1:21 pm

Had folfiri. Side effects were controlled with pre-chemo meds. Only side effect I noticed was I lost half my hair .
62 yo Male (polio survivor) DX 2-2018
2-18 right hemi-colectomy (robotic/minimally invasive)
Stage 3b - T4N1Mx
3-18 thru 8-18 xeloda
9-18 scans indicate 4 liver mets
and possibly in omentum/peritoneum
Upgraded to stage 4
9-18 thru 11-18 4 rounds Folfiri + Avastin, 2 rounds Folfiri only
12-26-18 3 liver mets removed (robotic/minimally invasive) + omentum biopsy (no cancer)
1-19 SBRT remaining 2 liver mets that were hard to reach
2-19 begin 6 rounds of mop-up chemo but folfox this time


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