The Colon Club

Hi, haven't posted in a while. Just wanted to check with others to see if they have had similar situations. My CEA (always an incredibly reliable indicator for me) is increasing dramatically. Have had recent CT and PET. Both show multiple small nodules (we are presuming mets) in both lungs as well as assorted PALNs and a clavicular node. The thought is that there is multiple met sites so expressing more CEA than just a single solid tumor. I have my doubts. I'm MSS and KRAS mutant. Awaiting Foundation One report (onc dropped the ball on that, should have been done a while ago). I'm on weekly 5FU maint.chemo and CEA is continuing to rise. On average of 4 points per week. I have a difficult time with any chemo AND the CEA keeps rising. I think we are missing something somewhere. Has anyone experienced anything similar? Would appreciate any insights.
Thanks!

Since it seem like the chemo is not working very well for you, have you looked into Immunotherapies? Keytruda has been approved for colon cancer.

If you have not already done so, get 2nd opinions at major cancer treatment centers.

Good luck,

Lee

We had an experience with para-aortic lymph nodes early on, which are often associated with CA199 as a tissue marker related to KRAS mutants etc. Often CA199 serum marker can be a useful series in the teens and above for advanced CRC, not just "37 and above", the typical Upper Limit (detection cutoff for a single test of pancreatic cancer). For us, a 4 CEA point rise paralleled one 2 cm LN met.

We applied a lot of high potency supplements (onc snickers or barfs here, we don't care) with 5FU, cimetidine (CA199 related) and IV vitamin C. By slightly increasing daily oral 5FU, we could stop and reverse the rising CA199, but not reverse CEA. We then had a single LN cluster cut out, after diligent medical search for an able and willing surgeon, head of dept regional center. Later, we were able to reverse small CEA, CA199, or AFP features with all the oral 5FU, IVC, high potency supplements, cimetidine and celebrex. Some (groups of) supplements clearly made various differences.

Our interim strategy was to stop the LN mets' spread and slow the existing ones down by revitalizing 5FU with ordinary materials, personalized. Sometimes we dissolve or petrify lung or liver features too. Some people have done this with Xeloda and celebrex for over 10 years, it takes personalized chemistry to stop/slow the particular cancer situation. The more active chemistries, the merrier. We had to be more biochemically aggressive than any of the ND/MDs. We steer with expanded blood markers, CBC+CMP+CEA would not quite make it.

I was told that my maintenance (5fu) would end when my cea jumped 50% - from around 4 -5 to 6 -7. It jumped a month ago, along with small growth in tumour in liver. So I switched to FolFox, I did 16 orunds of Folfiri last year and was on a kind of break.

Sounds like the maintenance mode is over for a bit.

Oncologist said that after 12 rounds of Folfox I would probably go straight to maintenance with minimal breaks (I will be travelling off chemo)

Good luck!

Emzee
My cea went crazy from around 2 to almost 30, 000 within 7- 8 months.
It was collaborated by pet/ ct scans showing rapid growth of mets in lung , peritoneal region and livers. Oncologist had never seen such aggressive growth of cea.
No chemo was working . Then it was revealed that I am Lynch with msi-high.

It seems for some msi-high cases 5 fu actually aggravates the situation. ( my opinion )

Immunotherapy in form of Opdivo ( nivolumab ) seems to have worked in my case.

Hopefully, this info helps you.