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Severe left side pain: Colon then liver??

Colorectal Cancer | Last Active: Sep 26, 2023 | Replies (12)

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@rjjacobsen

First, I'm sorry for your diagnosis. I'll try to post some things from my experience that might be helpful or at least give you an idea of what you're facing.

I had(?) colon cancer and they were going to take half of the colon, but decided to take the whole thing due to damage elsewhere, Connected the small intestine to the rectum. While they thought they got it all, I did adjunct chemotherapy for 8 months. Yes, I got the chemo port installed.

Getting the port installed was done outpatient at Mayo-Rochester, but your procedure may be different. While yours may be different, my chemo regimen was to go to the hospital as an outpatient - do blood work, if OK, get an IV of 5% dextrose started, get 10 ML of steroid injected, as it works through you get the anal "ring of fire", then you get the first of the chemo drugs infused over a 2 hour period - mine was oxaliplatin, when that's done, I got a take home infusion device with fluorouracil (5-FU) for a 22 hour infusion and when done return to the hospital where they take it off. The FOLFOX6 protocol to be specific.

Ideally, you repeat this every 2 weeks - if you can handle it - for 6 months. Nurses told me nobody completes this in 6 months - I needed 8 due to complications. Of each 2 week cycle, the first week I got less useful (tired and weak), with the peak at 4-5 days, then I gradually got better over the next week. Each cycle, I never fully recovered so as the time went on I got weaker and weaker, and thus had to postpone a cycle. While being treated with chemo, you will experience tingling and numbness - in particular you mouth/lips, but may also have it in extremities. I had it in my feet and to a less degree in the fingers. This can take considerable time after end of chemo for that to subside. It's been nearly 2 years post-chemo and while better, a couple of my toes still tingle.

Also they did CAT scans which found a lot of irregularities - nodules in the thyroid, numerous kidney cysts, several liver cysts and spots on the lungs. After repeated scans over time, these were all thought to be non-cancerous because they are stable - size growth is an indicator, but we still do regular scans. Typically, post-cancer scans are done quarterly for the 1st year.

If the cancer returns, you may have to do another 12-week round of chemo. Ick.

I have one remaining spot that is of concern - it had been decreasing in size, but last scan 3 months ago showed it growing again. It's too small to biopsy, too small to treat... so far. We will see when I get more scans in a month and determine a course of action.

Hope this helps. I hope they can excise that liver tumor via arthroscope.

All the best to you!

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Replies to "First, I'm sorry for your diagnosis. I'll try to post some things from my experience that..."

Wow you have been thru the ringer! Bless your heart.. the 13 lymph nodes were cancer free.. good I think? Thinks he got all from colon . dont know when it got to liver.. no symptoms. Which is good right? Just nervous within my soil beside me.. he would have soooo strong for me.