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.

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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@tgoz

It is definitely not the same. There are threads here explaining it in detail, but my basic understanding is that they implant a small pump inside the abdomen, it is accessed by a port under the skin and it's filled with really strong chemo. My friend was in the original trial and he handled very well but that around 15 years ago, so it's probably different now.

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Lo felicito esperó que siga así, si es católico o prácticas cualquier religión la fe te salvo, larga vida y que puedas resolver el problema de la próstata.

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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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@tgoz

It is definitely not the same. There are threads here explaining it in detail, but my basic understanding is that they implant a small pump inside the abdomen, it is accessed by a port under the skin and it's filled with really strong chemo. My friend was in the original trial and he handled very well but that around 15 years ago, so it's probably different now.

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It's called a hepatic pump. I believe it stays in you for several years after you finish normal chemo and it infuses 5fu directly into your liver so fewer side effects.

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https://connect.mayoclinic.org/discussion/haic-pump-for-liver-mets/
I believe this links to discussion about the pump therapy mentioned in this thread.

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Hi @stayfaithful, I see you got many responses to your questions about options for stage IV colorectal cancer. I'm so glad you asked. Have you discussed Lonsurf with your team? Or Lonsurf + Avastin as @isadora2021 mentioned. Are you a candidate for immunotherapy?

How are you doing?

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@colleenyoung

Hi @stayfaithful, I see you got many responses to your questions about options for stage IV colorectal cancer. I'm so glad you asked. Have you discussed Lonsurf with your team? Or Lonsurf + Avastin as @isadora2021 mentioned. Are you a candidate for immunotherapy?

How are you doing?

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I was on Lonsurf for about 2 months. Very bad side effects and didn't kill the cancer cells.

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@colleenyoung

Hi @stayfaithful, I see you got many responses to your questions about options for stage IV colorectal cancer. I'm so glad you asked. Have you discussed Lonsurf with your team? Or Lonsurf + Avastin as @isadora2021 mentioned. Are you a candidate for immunotherapy?

How are you doing?

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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

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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NRAS (Neuroblastoma-RAS) is a gene that plays a crucial role in cell growth and survival. Mutations in the NRAS gene are commonly found in various cancers, including melanoma and colorectal cancer12. These mutations often occur in specific codons, such as 12, 13, and 611.

The presence of NRAS mutations can significantly influence treatment decisions. For instance, colorectal cancers with wild-type (non-mutant) NRAS may respond well to EGFR inhibitors, while those with NRAS mutations might require different therapeutic approaches.
Patients whose colorectal cancer has NRAS wild-type benefit from targeted treatment with EGFR (epidermal growth factor receptor) inhibitors.
Cetuximab (Erbitux) and panitimumab (Vectibix) are EGFR inhibitors used in treating NRAS wild-type colorectal cancers. They are sometimes called anti-EGFR drugs or anti-EGFR monoclonal antibodies.
If your colorectal cancer has an NRAS mutation

Colorectal cancers with NRAS mutations may be aggressive and have a higher risk of recurrence. Talk to your oncology team about how you will be checked for recurrence during follow-up care.
When NRAS mutations are present, treatment options include traditional chemotherapy combinations (for example FOLFOX, FOLFIRI, CAPOX).
Conventional chemotherapy drugs are sometimes combined with bevacizumab (Avastin), which is a targeted therapy that prevents the formation of new blood vessels to supply the tumor with nutrients.
If indicated by other biomarker testing results, such as microsatellite instability (MSI), immunotherapy drugs, like nivolumab (Opdivo), pembrolizumab (Keytruda), and ipilimumab (Yervoy), may be used in patients with NRAS mutant cancer.
Other targeted treatments for NRAS mutant colorectal cancer may be recommended based on the results of other biomarker testing (such as BRAF inhibitors and MEK inhibitors in colorectal cancer subtypes with BRAF mutation).
NRAS mutant colorectal cancer is resistant to EGFR inhibitors, and they are not recommended unless in combination with other targeted therapies.
There are currently no approved therapies directly targeting NRAS mutations in colorectal cancer. However, there are ongoing clinical trials for targeted treatments for NRAS wild-type and NRAS mutant cancers. Talk to your healthcare team about whether you could benefit from participation in a clinical trial.

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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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