Stage 4 signet ring

[Hopeful_wife]

Wife to 41 yr old very healthy active husband. Diagnosed April 1st 2022 right side colon cancer, signet ring cell type. May 22: attempted colectomy aborted bec of peri mets
June 22: CTCA Atlanta, exploratory lap. PCI score of 2 for proposed cytoreduction with HIPEC. Started chemo with Oxali, Leuco, Irenotican, 5fU
August 22: finished 3 months of chemo. Chemo rest prior to surgery
Oct 22: cytoreduction with HIPEC with mytomycin-C. Total colectomy with end ileostomy. 29/63 lymph positive. End Almost 3 weeks in hospital bec of infection. Lost 30 lbs post surgery. Surgical oncologist said he feels very confident that he removed everything visible since he only had few peri Mets and was only located lower abdomen. All other organs major organs are clear. Still recommend to finish up remaining 3 months of chemo.
December 22: second 3 months worth of post surgical chemo started without irenotican.
January 23: slowly gaining weight back, Appetite coming back. Resumed working full time.
Feb 23: tolerating work well. Will finish up chemo 28th of Feb and will have new baseline CT then CT scans every 3 months for 2 years.

Question:
He is worried about not being on chemo. He wants to stay on chemo. Is there maintenance chemo for his type of cancer?
Tumor studies: Onco said they can give him an immunotherapy drug but he is saving it as a last resort. Any opinions on this?
Supplements: he is taking Reishi, Turkey tail, vitamin C, vitamin D, B6 and 12, L carnitine. Any other suggestions?
Diet: Low sugar, low fat, very little red meat, no alcohol, no cigarettes. Any other suggestions?

Everyone who knows or doesn’t know he has stage 4 can’t believe he has cancer because of how good he looks and how well he is tolerating chemo and how good he’s recovered from surgery. Only side effect is slight nausea couple days after chemo and sensitivity to cold specially his hands.

Really in need of survivor stories right now. I’ve read all the horrible stuff and I am well aware of how nasty signet cell is. Just really need something to hold on to for my sanity. We have four amazing wonderful good girls age 8, 10, 12, and 15. We worked hard to save money. I work full time. He works a full time job and a part time job and we finally moved in our new house December. I feel like we did everything right. Worked hard, pinched pennies, saved money built a brand new house, and just when everything is falling into place we got hit with this. Life is so unfair sometimes.

[roadrunner]

HopefulW: It sounds like he was on FOLFOXFIRI, and is now on FOLFOX. Those are, I believe, SOC “heavy duty” chemo regimens that appear appropriate for his disease. The Oxaliplatin, in particular is very hard to tolerate for many people, and does often cause peripheral neuropathy, particularly over time. This often manifests first through numbness or paresthesia of the hands and/or feet. It can be permanent and in severe cases disabling, so care should be taken there. There are, of course, many other potential side effects of these drugs, but your husband, thankfully, seems to be dodging them. The 12 cycles your husband is taking is, however, usually the max, though I think I’ve seen more in some cases (though this is possibly not done anymore). I’m not entirely clear whether he’s taking the 5-FU through infusions (pump or bolus) or in pill form (Xeloda), but it looks like the former, so I guessed FOLFOXFIRI/FOLFOX.

Given that he had metastasis, I would think his team would be open to maintenance chemo, at least for a time. One obvious candidate would be Xeloda (Capecitabine, basically 5-FU in pill form). You should discuss that, and any other options, with them. I found Xeloda much more tolerable than FOLFOX, though it does have non-negligible side effects in many people, especially over time.

Which brings me to the last point. There are posters on this board who do lots of supplementation (including infusional high-dose vitamin C) to support higher-dose Xeloda maintenance therapy. I am not endorsing that (I simply don’t have enough information, so not criticizing it either), but I have seen studies that appear to provide support, and there is also positive anecdotal evidence in their posted experiences. I hope that one or more of those posters will post to this thread, and then you can get more information and make your own evaluations. If necessary, you can also search past posts on those topics. Of course, each situation is unique. For example, I do not know whether Xeloda (at any level) is effective at controlling peritoneal metastases. That’s likely another primary question for your team, along with their views on long(er) term Xeloda use (w: or w/out IVC). The signet cell context may also be relevant.

Sorry this isn’t very specific or definitive. I’m not an expert in this area and am just trying to get the discussion going. Your husband seems to be lucky (or just strong) in terms of how he tolerates chemo, so it seems smart to try to max out there (but with full information on the downsides and any possible mitigation of same). There are, of course, “low cost” interventions such as vigorous exercise, dietary changes, etc., that he can take advantage of. He seems to be supplementing already, but if he can handle exercise, that’s always a big plus in the context of metastatic risk.

Finally, if you want to get the most out of this board (and it can be a lot!), you should add a signature. That will help people understand and respond more quickly and more precisely. Good luck!

[Hopeful_wife]

Thanks for your input roadrunner. We see the oncologist tomorrow and will surely ask him about Xeloda. I’m so relieved I found this site. I’m still trying to get familiar with terms and maneuver myself around it. Thank you so much. I will be reading your post again before we meet with the dr to make sure I remember what to ask.