1. < Colorectal Cancer

Other options available for Stage 4 Colon Cancer?

Posted by stayfaithful @stayfaithful, Aug 26 3:34pm

Hello everyone. I've read these forums for a while but this is my first post.

I am wondering if anyone has any other potential options that I can try. Whether its another chemo, alternative remedy, clinical trial, diet, a book, literally anything at all would be so greatly appreciated.

Also, if anyone has any experience with Lonsurf, I'd appreciate that insight as well.

My story: I have stage 4 colon cancer with liver metastasis and lymph nodes. I was diagnosed about a year ago (July 2023)I was told they couldn't operate (Which I still don't fully understand why) So I did about 9 round of FOLFOX, then just 5-FU for a while, then Irenotecan + 5-FU. My CEA just recently jumped from around 4 to 6.1. I am about to try Lonsurf.

What else can I do? I am determined to keep fighting. Thank you all.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

tyralynn | @tyralynn | Oct 3 2:44pm

Hi. I'm in chemotherapy right now and the nurse always asks me if there's pain. I reported it to her and to my oncologist. He suspected it was from the surgery I had that removed my ovary which was pretty much taken over colon cancer. I think that because the pain moves and it isn't in the place of diverticulitis and it is not 24/7 at all, it might not be another metastasis.

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isadora2021 | @isadora2021 | Oct 4 5:28pm
In reply to @tyralynn "I am new to a stage four diagnosis. Had stage 3 in 2022 and twelve rounds..." + (show)
@tyralynn

I am new to a stage four diagnosis. Had stage 3 in 2022 and twelve rounds of Folfox which we all thought was going to cure, but then metastasized to an ovary earlier this year. That ovary was removed so no current tumors. I'm at the point where every pain (I have a high threshold and rarely had pain before), is so frightening.

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@tyralynn I’m in a similar position. I too have a very high pain threshold yet suffer sporadic sharp pains in my abdomen region after treatment ended.

I was diagnosed with stage 4 appendix cancer in 2021 and had a year of major surgeries (including a radical hysterectomy, HIPEC, cytoreductive surgery, a peritonectomy, chemo and immunotherapy).

I’ve been NED (no evidence of disease) for over 2 years. I panicked when I got pans and was hyper vigilant about any pain.

I’m now PET-CT scanned every 4 months plus blood tests, have a colonoscopy and a mammogram yearly - and those help me relax between scans and enjoy life until the next tests. It’s taken a while to get into that cycle. Stress is so very bad for our health.

In my case my oncologist believes my pains are caused by occasional digestive motility issues plus adhesions from surgeries ( in particular a colon resection). I monitor my diet very carefully (especially fibre - not too much, not too little - and water intake).

I do tell him each 4 monthly meeting what’s happening so he can recheck my test report.

I hope you can find a way to ease your mind too.

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isadora2021 | @isadora2021 | Oct 4 6:07pm
In reply to @tyralynn "I am new to a stage four diagnosis. Had stage 3 in 2022 and twelve rounds..." + (show)
@tyralynn

I am new to a stage four diagnosis. Had stage 3 in 2022 and twelve rounds of Folfox which we all thought was going to cure, but then metastasized to an ovary earlier this year. That ovary was removed so no current tumors. I'm at the point where every pain (I have a high threshold and rarely had pain before), is so frightening.

Jump to this post

It may be worth discussing with your oncologist the scar tissue from your surgeries. Mine is manageable but I honestly didn’t know about scar tissue as a side effect of treatment.
https://my.clevelandclinic.org/health/diseases/15254-abdominal-adhesions

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danandnan2024 | @danandnan2024 | Oct 5 6:21am

have you heard of colontown on facebook? there are many people in your shoes with lots of comments.

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cloudybright | @cloudybright | Oct 7 8:44am
In reply to @colleenyoung "@cloudybright, I can almost hear you rolling up your sleeves to take this on. Getting the..." + (show)
@colleenyoung

@cloudybright, I can almost hear you rolling up your sleeves to take this on. Getting the port installed will make future treatments easier on your arms. Please keep us posted. Sending you peace and strength in whatever quantities you need.

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On the day the port was scheduled I was sick and vomiting. Port canceled. No treatment.
Instead, a blocked bile duct was discovered - a result of an inflamed lymph node.
I was admitted through emergency. A successful procedure to install a bile duct stent was performed. Port install rescheduled for Oct 8th and first chemo starts that same day - it looks like a long day ahead.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 9 1:34pm
In reply to @cloudybright "On the day the port was scheduled I was sick and vomiting. Port canceled. No treatment...." + (show)
@cloudybright

On the day the port was scheduled I was sick and vomiting. Port canceled. No treatment.
Instead, a blocked bile duct was discovered - a result of an inflamed lymph node.
I was admitted through emergency. A successful procedure to install a bile duct stent was performed. Port install rescheduled for Oct 8th and first chemo starts that same day - it looks like a long day ahead.

Jump to this post

@cloudybright, thinking of you on the day after your first chemo.

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