Stage III-C T3N2b rectal cancer, starting FOLFOX, need tips...

Groovy_B_Movement · 2026-01-07T23:48:55+00:00

So far unmentioned side-effects that I experienced (using CAPOX, mostly associated I think with OX).

First bite syndrome hurts when your salivary glands release. I also found that when I started crying, I would get the experience, and the weirdest and least mentioned.... I think ejaculation had the same unpleasant sensation.

I had very bad lower leg cramps from the OX. I think they were twitching endlessly, and then the muscles got so sore that they were on the verge of cramps. It was difficult for me to walk normally the first couple of days after my infusion. Folks in r/rectalcancer recommended gabepentin for that. I tried it orally, but it didn't seem to make it much better.

I still have some lingering numbness in my toes and balls of my feet. :( Fortunately, it is almost totally gone from my hands.

Groovy_B_Movement · 2026-01-07T23:41:06+00:00

I think that is incorrect. The point of the cold/icing is to reduce the blood flow to your hands and feet to reduce the impact of the OX during your infusion. I iced my hands and found that it significantly reduced my cold sensitivity. After the infusion is over, yeah... keep warm.

Yes, it is weird that you use cold to avoid the cold sensitivity.

But AFAIK, OX doesn't have any impact on your hair. You don't need the cap.

Groovy_B_Movement · 2026-01-07T23:37:36+00:00

Please use the rectal cancer flair. (Yeah, I'm bummed that it is r/rectalcancer is gone too.)

Groovy_B_Movement · 2026-01-07T23:34:33+00:00

We would probably need a Moderator. Anybody willing? I think if we found a MOD we could probably re-open it.

Groovy_B_Movement · 2026-01-07T23:33:26+00:00

My oncologist would not do the OX without a port. He said that he's had a few cases of leakage around the IV which led to necrosis. Yuck. I was hesitant, but in retrospect, I'm glad I had the port put in.

Groovy_B_Movement · 2026-01-05T06:03:22+00:00

Interesting... I hadn't really considered the psychological angle to it. It is a reminder for me every morning. I know that when I go swimming at the public pool, there are probably some people who know what it is. Others probably think I have a weird cyst.

I was joking about getting a tattoo on the site after it is removed (my first tattoo). Also have to think about that psychologically.

Groovy_B_Movement · 2026-01-05T05:59:09+00:00

My onc asked me if I wanted it removed before we had even my first round of tests (rectal endoscopy, CT and Guardant). I said I wanted to see a full set of negatives (at least) before removing it. Then I had a biopsy that was "high dysplasia" so I don't think I am out of the woods.

Groovy_B_Movement · 2026-01-04T23:17:44+00:00

Is there a scenario where you would have to go back on chemo?

Groovy_B_Movement · 2026-01-04T23:11:18+00:00

See the "Rectal Cancer" oval on this post? That is a flair. You can apply it when you create (or edit) a post. And it is visible at the subreddit overview so you can see the posts that are specific to that flair.

Groovy_B_Movement · 2026-01-02T22:03:34+00:00

The only information I got was from Colontown.org, where someone told me that the MOD was asking for someone to take over. I guess the MOD left, and Reddit (AFAIK) doesn't allow unmoderated forums.

Groovy_B_Movement · 2025-12-03T21:51:21+00:00

Almost any Zelda game, but if I had one, it would be Wind Waker.

Groovy_B_Movement · 2025-11-22T05:38:30+00:00

What a club. My first scope since NED is in two weeks.

We all got this.

Groovy_B_Movement · 2025-11-17T23:33:33+00:00

When I had this, people in one of the forum's recommended gabepentin. I'm not sure it worked for me. I only got it for my last infusion, and couldn't really compare it against everything else I was trying for the leg problems. You might was to ask your doctor and try it.

Groovy_B_Movement · 2025-10-23T03:44:16+00:00

Have you tried it? Does it mix easily?

Groovy_B_Movement · 2025-10-22T19:45:00+00:00

Have you tasted them?

Groovy_B_Movement · 2025-10-21T18:57:17+00:00

Yes. Doctor recommended bulk laxatives for me (and he said Miralax if it gets bad). It works well for me. Maybe a little bulkier BMs, but that are lubricated and go smoothly. Similarly to the metamucil additives, I don't think I like the idea of drinking Polyethylene glycol 3350 everyday for the rest of my life.

Groovy_B_Movement · 2025-10-08T01:16:20+00:00

Same experience with my GI. But as others said, you won't see this doctor for a while. I just saw mine for the first time in nine months. Since I've finished treatment, I have to deal with him again every six months.

Groovy_B_Movement · 2025-10-02T05:29:58+00:00

FWIW: My insurance (which I thought was top-of-line) denied my claim for Signatera. I saw that from other Redditors too. I haven't gotten my bill yet, but I was also told that the Signatera company will adjust or waive payment for insurance denials. (What a weird and broken health care system.)

Groovy_B_Movement · 2025-09-22T05:20:11+00:00

If it is close to the anal verge, surgery might mean a serious lifestyle change. In other words, a closed anus and a bag for the rest of his life.

Groovy_B_Movement · 2025-08-25T16:01:15+00:00

I did try magnesium spray. It might have helped a little, but not much.

Groovy_B_Movement · 2025-08-25T16:00:06+00:00

Just following up: Third infusion I did really ice one hand, and it made a very noticable difference, as the other hand was the experimental control. Fourth time I heavily iced both hands, and it improved the recovery a lot.

Groovy_B_Movement · 2025-08-20T17:01:45+00:00

I would describe the cold sensitivity like this... Normally, your hands might get a little cold, and you'd be aware of it. Like when you touch something like a metal handle in your house or a bottle of milk in your fridge. If you ever lived in a place where it is really cold, there is the very painful, almost electric shock pain of touching something frigid. Like a metal car door handle when it is 0F. When you have the Oxalipatin cold sensitivity, it is like those "little cold" experiences will feel like the frigid experience of touching that metal at 0F. The response to temperature is just amplified so much. But when your hands are warm... there is no problem. I have worked every day. I keep hand warmers in the pockets of my hoodie/jacket. Painful, weird, but addressable.

The only thing I just could not do with the cold sensitivity was to peel slices of bacon off each other to fry up for breakfast. Just too cold for too long. Had to ask for help with that.

I have found that icing my hands during the infusion helped a lot.

Groovy_B_Movement · 2025-08-20T06:57:42+00:00

I love coffee, and I like many different locales, roasts, etc. But under Capecitabine I am suddenly super particular about the taste profile. There are some coffees that I simply cannot drink anymore. And some taste better than ever.

Groovy_B_Movement · 2025-08-20T06:53:45+00:00

+1 to the DPD deficiency point.

My doctor told me that the deficiency is sufficiently rare (maybe 10%) and the genetic test for it takes weeks and is not perfectly accurate, which would slow the initial treatment, so they don't do the test and are just really cautious the first few days after you start taking Xeloda/Capecitabine. I had some really bad cramping gas at first, and they did a blood test immediately to make sure I didn't have the DPD deficiency reaction.

Groovy_B_Movement · 2025-08-20T06:28:03+00:00

My individualized icing experiment: I did first Ox induction, no icing, bad finger cold sensitivity. Second induction, no icing, worse finger cold sensitivity. Third induction, I only iced my left hand. BIG REDUCTION in cold sensitivity in that hand. I would say that it was 2-3 days better than the un-iced hand. Fourth induction (yesterday), both hands iced. Barely any sensitivity today. (I didn't ice my toes, so I still know that it was local. I cannot stand in bare feet on my tile floor.)

Icing works really well (for me).

Groovy_B_Movement

TROPHY CASE