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.

@stayfaithful

Yes I am starting Lonsurf and Avastin but I have come to see it as a tool that buys me more time to find a more sustainable (or curative) option. Unfortunately I am told I am not a candidate for typical hypnotherapy. (I am microsatalite stable)

As it stands, I am pursuing 2 other options:

1. The HAI pump idea that someone suggested. Although I had an oncologist tell me that since I had disease progression while on 5-FU that I probably wouldn't see great results with the pump because that's the drug they put inside it. That doesn't make sense to me because the pump should be around 400 times more powerful and directed... so I'd appreciate anyone's insights on that.

2. Clinical trial version of immunotherapy for people with NRAS mutation. But this seems extraordinarily difficult to search for since reading these clinical trials is like deciphering ancient greek. If this helps anyone else, I've been using these websites to search clinical trials: https://clinicaltrials.gov and https://www.mycancergenome.org

Lastly, thanks everyone for your responses and thanks Colleen for checking in. I appreciate the support and insights of this community. I will never stop fighting the good fight, no matter the odds. May God bless you all.

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@stayfaithful Wishing you all the best with your Lonsurf -+ Avastin treatment. Please let us know how you go.

I am also part of the Belong cancer app community (which is free although run by an array of expert doctors) but the assistance segment to find a clinical trial has recently started charging due to the time involved. That might be of interest to you in your search for a clinical trial. All the very best.

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@dpax

My husband has metastatic, stage IV colon cancer, after having survived 7 years from his initial 3b colon cancer that was treated w/ 12 rounds of Folfox tx. The cancer spread is in several places but his liver is by far the worst spot. Liver is inoperable. He was given two choices...hospice w/ 9 mo. to a year before a serious occurrence or 2 to 3 years of chemo for the remainder and/or David decides to stop tx.

With little hope they decided to give my husband a Hepatic Artery Infusion Implant. Operation went well and he started his Floxuradine tx a month or so later. He has only had 2 HAI's because his bilirubin and ALT levels are abnormal. This chemo is 300 to 400 times more powerful directly to his liver w/ few to no side effects, which David enjoyed. The idea is to shrink his liver masses, making it/them operable. David still gets his systemic tx through his port because he has tumors in a few other places and he is battling those as well.

We are taking a brief hiatus hoping that he can resume both chemo tx's at the same time. I'm hoping to see how others and their tx's are working for them.

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Hi @dpax, just checking to see how you and your husband are doing. I hope you were both able to enjoy the mini treatment vacation. When will he resume treatment?

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@cloudybright

In response to @stayfaithful, yesterday was my first consultation with the oncology team regarding the CT and MRI scans that they did.
Operating "could" be done, but since it is stage 4 (rectal tumor, liver, pancreas and other spots) surgery is not a good option. Surgery, as explained to me, would not be a "cure" whose benefits might be none or marginal - meaning that I would undergo a grueling and major disruption to my life with no promise of a benefit.
It sounds like your oncology team leader came to the same conclusion but without telling you so (or perhaps they did but you missed it under the avalanche of other information).

My onc team now want to biopsy the liver and pancreas to learn more about the cancers - the data will tell them which known therapies are most likely to be successful. Currently, the MRI/CT "shadows" on the liver and pancreas are mysterious but indicative of tumors.

So. . .it's into the machinery of modern healthcare I go. The unwanted adventure begins!

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@cloudybright, how are you doing? Did you have the biopsies done and now have a more complete diagnosis and treatment plan?

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Yes, almost. Biopsy of the pancreas is adenocarcinoma - same as the rectal tumor. The liver could not be accessed through the stomach to obtain a needle biopsy although they do have ultrasound images of it.
Close enough to start chemotherapy.
This Wednesday I meet with the hematology doc to learn how screwed I am.
And Thursday they will install a port.
So. . .not long before the battle journey starts.

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@cloudybright

Yes, almost. Biopsy of the pancreas is adenocarcinoma - same as the rectal tumor. The liver could not be accessed through the stomach to obtain a needle biopsy although they do have ultrasound images of it.
Close enough to start chemotherapy.
This Wednesday I meet with the hematology doc to learn how screwed I am.
And Thursday they will install a port.
So. . .not long before the battle journey starts.

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Suerte te deseo lo mejor no pierdas la fe que Dios estará allí,acompañándote todo saldrá bien.

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@cloudybright

Yes, almost. Biopsy of the pancreas is adenocarcinoma - same as the rectal tumor. The liver could not be accessed through the stomach to obtain a needle biopsy although they do have ultrasound images of it.
Close enough to start chemotherapy.
This Wednesday I meet with the hematology doc to learn how screwed I am.
And Thursday they will install a port.
So. . .not long before the battle journey starts.

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@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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@nrdl2879

My husband is on Lonsurf, just starting the second series. So far he is stronger than on chemo. He has stage 4 colon and in both lungs. Hopefully this will slow the spread in his lungs

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Update. He took the first 2 week cycle and then 2 weeks. When he started the second cycle, by day 5 he was flat on his back in bed. When he tried to get up he blacked out. Dr told us to stop the Lonsurf and tomorrow we will find out what is next

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Dr put him back on Lon surf just a lower dosage. Pet scan first week of November

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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 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 can imagine that every and any pain causes a fright response. That's only natural. Did your oncologist tell you what type of pain to report to your team? Do you have any persistent pain anywhere? Are you on treatment like chemo or immunotherapy?

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