Stage 4 colon cancer

Posted by nathan45 @nathan45, Jan 20 12:49pm

Hi…I am 45 years old with stage 4 colon cancer. It has spread to my lungs, stomach, liver and small intestines. The only thing about having this colon cancer is that is has never been in my colon. They can’t figure out where it came from. I can’t have any more surgeries, or radiation, so I’m just a sitting duck. There has got to be more options…

Hello @nathan45 and welcome to Mayo Connect. Thank you for sharing your cancer difficulties with Connect. As you probably know, we are not medical professionals, but patients, like yourself, who come to Connect to give and receive support and encouragement.

I can understand that you must feel discouraged since you have been told there are no more treatment options. It is certainly understandable that you would like to find more options.

Have you considered getting a second opinion at a multidisciplinary medical center like Mayo Clinic or a university medical center? If you have not visited a medical center like this, that might be a good consideration now. These centers have a lot of research going on and they are often helpful in coming up with answers to hard-to-treat problems. Do you live near a center like this or another good cancer center?

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Hi Nathan wow! You got a lot there. Teresa’s suggestion is a great idea. She would know. She’s a Mentor for good reason. No answers here, but I also hope you take her suggestion. I live close to OHSU in Portland, Oregon, a teaching/researching hospital. They do some pretty innovative treatments with patients like yourself. Good luck to you. Keep at it. Take care. Virgo52

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NATHAN,My Heartflet Best Wishes go out to YOU! I had StageIV colon cancer 21 years ago! The Chemo came an hour short of killing me! After 14 days in a coma I woke up! The cancer was gone! This was after the next year of 365 days I spent almost all or part of 200 of them on a river or stream Fly Fishing, plus working traveling the Rockies on "Business"! Poin is which is not easy, I cleared my mind of the disease! I know that sounds hard to understand and maybe hard for you to do! I don't know your personal sitituation. But it is the Truth! You have to get away from it.
Sundance(RB)

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Have you asked about immunotherapy? Not sure about your cancers but in some patients (brain tumours and melanoma are examples) results can be remarkable. It is about your own body fighting back. Doesn't hurt to ask. Maybe there is a clinical trial going on somewhere.

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@lynda48

Have you asked about immunotherapy? Not sure about your cancers but in some patients (brain tumours and melanoma are examples) results can be remarkable. It is about your own body fighting back. Doesn't hurt to ask. Maybe there is a clinical trial going on somewhere.

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I live in Colorado Springs and I have been going to Rocky Mountain Cancer Center. I asked them about clinical trials and they said I wouldn’t qualify. I called the Mayo Clinic and they straight up asked me if I was willing to do a clinical trial. My sister in law has been doing some research and she asked me if I would be willing to do the immunotherapy. I looked it up and I think that would be awesome. So I am looking into that. Thank you so much!

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@sundance6

NATHAN,My Heartflet Best Wishes go out to YOU! I had StageIV colon cancer 21 years ago! The Chemo came an hour short of killing me! After 14 days in a coma I woke up! The cancer was gone! This was after the next year of 365 days I spent almost all or part of 200 of them on a river or stream Fly Fishing, plus working traveling the Rockies on "Business"! Poin is which is not easy, I cleared my mind of the disease! I know that sounds hard to understand and maybe hard for you to do! I don't know your personal sitituation. But it is the Truth! You have to get away from it.
Sundance(RB)

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I have stage 4 colon mestastsized into the liver. I go for chemo every week and I also take Chemo pills. At one point it had it stable but then I got diverticulitis . I had to go iglff my chemo. I am now back on it but the pills really kick my butt. I have BRAF mutated cancer and my Dr says if this does not work they will have to give me a bag to bypass my colon . Thrn they can start on the liver . I have 2 large spots on the liver . One in each lope5.
I was wondering if anyone else has this kind of cancer . They tell me here in Neenah WI that only like 3%!of people only get this

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@nathan45

I live in Colorado Springs and I have been going to Rocky Mountain Cancer Center. I asked them about clinical trials and they said I wouldn’t qualify. I called the Mayo Clinic and they straight up asked me if I was willing to do a clinical trial. My sister in law has been doing some research and she asked me if I would be willing to do the immunotherapy. I looked it up and I think that would be awesome. So I am looking into that. Thank you so much!

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Hi @nathan45

Since you are interested in clinical trials here is a website from Mayo Clinic that you might find helpful.
https://www.mayo.edu/research/clinical-trials
And here is a link to information from the National Institute of Health about clinical trials:
https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial

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@duckduck2020

I have stage 4 colon mestastsized into the liver. I go for chemo every week and I also take Chemo pills. At one point it had it stable but then I got diverticulitis . I had to go iglff my chemo. I am now back on it but the pills really kick my butt. I have BRAF mutated cancer and my Dr says if this does not work they will have to give me a bag to bypass my colon . Thrn they can start on the liver . I have 2 large spots on the liver . One in each lope5.
I was wondering if anyone else has this kind of cancer . They tell me here in Neenah WI that only like 3%!of people only get this

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@duckduck2020, Mayo Clinic is making great advances with BRAF mutated colorectal cancers.
See this article and excerpt
– Identification of actionable alterations in colorectal cancer are leading to the development of novel treatment strategies https://www.mayoclinic.org/medical-professionals/cancer/news/identification-of-actionable-alterations-in-colorectal-cancer-are-leading-to-the-development-of-novel-treatment-strategies/mqc-20491602
"A lot of advancements have been made with regard to BRAF V600E mutations, most notably from the BEACON trial and the ANCHOR study. We also know about FGFR alterations, NTRK and ROS1, and ALK aberrations. We know that up to 50% to 75% of patients may benefit from some type of targeted therapy."

I hope that there is a clinical trial that you can take part in at Mayo Clinic or a participating cancer center.

@nathan45, I think the above link may also be relevant for you. Have you had genetic testing to know if your cancer has specific markers or mutations, such as KRAS, HER-2 or BRAF?

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@colleenyoung

@duckduck2020, Mayo Clinic is making great advances with BRAF mutated colorectal cancers.
See this article and excerpt
– Identification of actionable alterations in colorectal cancer are leading to the development of novel treatment strategies https://www.mayoclinic.org/medical-professionals/cancer/news/identification-of-actionable-alterations-in-colorectal-cancer-are-leading-to-the-development-of-novel-treatment-strategies/mqc-20491602
"A lot of advancements have been made with regard to BRAF V600E mutations, most notably from the BEACON trial and the ANCHOR study. We also know about FGFR alterations, NTRK and ROS1, and ALK aberrations. We know that up to 50% to 75% of patients may benefit from some type of targeted therapy."

I hope that there is a clinical trial that you can take part in at Mayo Clinic or a participating cancer center.

@nathan45, I think the above link may also be relevant for you. Have you had genetic testing to know if your cancer has specific markers or mutations, such as KRAS, HER-2 or BRAF?

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Yes it is BRAF

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Thank you for the info .May God Bless you

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@hopeful33250

Hi @nathan45

Since you are interested in clinical trials here is a website from Mayo Clinic that you might find helpful.
https://www.mayo.edu/research/clinical-trials
And here is a link to information from the National Institute of Health about clinical trials:
https://www.nih.gov/health-information/nih-clinical-research-trials-you/finding-clinical-trial

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Thank you so much!

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