Stage 4 with mets to skin

Hi all,

I'm looking for some uplifting encouragement. My husband was originally diagnosed with stage 4 adenocarcinoma at the age of 32 in 2017. He underwent 12 rounds of FolFox, 5 weeks of radiation and a total colectomy. At the time of the colectomy he had 4 tumors in his colon but we were told he was left with negative margins and there was a less than 5% chance this cancer would return.

He was NED from 2017-2020. In the fall of 2020 he began to have fevers and felt like there was a rock in his pelvis. They found a recurrence and told us this recurrence could be removed with only surgery. He went into the procedure thinking it would be a 6 hour procedure but it turned into an 18 hour procedure. When they opened him up they realized the tumor that was small on imaging had spread throughout his pelvis.

After surgery he was started on Folfiri + Cetuximab and was initially responding to it. His CEA went down to 4 at it's lowest with NED on scans. He then got COVID and was off chemo for a few weeks. When he restarted his CEA slowly began to rise and 3 tumors in the pelvis began to pop up. He then had an area on the pelvic wall biopsied that showed mucinous adenocarcinoma and unrecetable They have since tried Folfox + Avastin with little success. He then showed some peritoneal spread of his cancer although we were told this was very early spread with no discrete mets (just some nodularity of the left lower quadrant of the peritoneum).

He was then transitioned to a clinical trial and has been receiving a a new immunotherapy with Cetuximab. His most recent CT showed no NEW mets but slightly increased size of the tumors in his pelvis. At this time he was hospitalized for a kidney infection so they were not sure if this is true progression or if this was the infection causing things to get bigger. For the past 1 week he has had excruciating pain in his legs with new tender nodules on his back. His CEA is now 1303. His oncologist is concerned he is having mets to his spine that are effecting his nerves. He also said these nodules on his lower back that popped up all of a sudden are cancer.

Does anyone have any experience with mets to the skin? I was reading online and skin mets usually indicate a very dismal prognosis. His oncology team is slightly confused because all of his scan do not show significant progression. They stated we have to get the lesions biopsied but they're very confident those nodules are cancer.

This has been a nightmare of a journey for us. We are expecting twins in 2 months and am holding on to hope that there will be a treatment out there that will give him more time with his children.

Thank you in advance!