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.

CEA of 6 is still really low. Did you have colon resection? You said you had metastasis to liver and lymph nodes.... When was your last CT done, what is the current status., what kind of surveillance program are you on?
LONSURF® (trifluridine and tipiracil) is a combination medication used to treat certain cancers. Here are some key points about it:

Indications:
LONSURF is prescribed for adults with colorectal cancer that has spread to other parts of the body (metastatic) and who have been previously treated with specific chemotherapy medicines.
It is also used to treat adults with a type of stomach cancer called gastric cancer, including adenocarcinoma of the gastroesophageal junction, that has spread and was previously treated with at least two types of treatment.

I just talked to my oncologist last week about my situation (the same as yours), and specifically asked about lonsurf. He stated this is no longer considered standard treatment, as it has not been shown to be effective.

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@roywalton

CEA of 6 is still really low. Did you have colon resection? You said you had metastasis to liver and lymph nodes.... When was your last CT done, what is the current status., what kind of surveillance program are you on?
LONSURF® (trifluridine and tipiracil) is a combination medication used to treat certain cancers. Here are some key points about it:

Indications:
LONSURF is prescribed for adults with colorectal cancer that has spread to other parts of the body (metastatic) and who have been previously treated with specific chemotherapy medicines.
It is also used to treat adults with a type of stomach cancer called gastric cancer, including adenocarcinoma of the gastroesophageal junction, that has spread and was previously treated with at least two types of treatment.

I just talked to my oncologist last week about my situation (the same as yours), and specifically asked about lonsurf. He stated this is no longer considered standard treatment, as it has not been shown to be effective.

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@roywalton
I just had a look on the internet and it seems Lonsurf + Avastin (targeted therapy drug) as of 2023 are used in combination for metastatic colon cancer where other treatments aren’t responding.

It would be interesting to see what your oncologist says about that combination perhaps?
https://www.drugs.com/medical-answers/studies-long-lonsurf-increase-survival-3016754/

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@isadora2021

@roywalton
I just had a look on the internet and it seems Lonsurf + Avastin (targeted therapy drug) as of 2023 are used in combination for metastatic colon cancer where other treatments aren’t responding.

It would be interesting to see what your oncologist says about that combination perhaps?
https://www.drugs.com/medical-answers/studies-long-lonsurf-increase-survival-3016754/

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yes, possibly, but then I think the biomarkers identified would be important to consider, eg immunotherapies do not work too well with CRC of certain biomarkers. That would be a great question to bring up

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@roywalton

Luckily my biomarkers were ok and I had Avastin with Folfiri as my first line treatment for stage 4 appendix cancer (treated the same as CRC).

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My husband was recently diagnosed with stage IV gejunction cancer with metastasis to liver and lymph nodes. He was also told no surgery or radiation, just chemo.

Yesterday he started with FOLFOX and Optivo (immunotherapy). They are checking HER2 and will add herceptin if appropriate (targeted therapy). Fingers are crossed!

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Is your husband Microsatellite Instable and or MMR Deficient?
I believe that Immunotherapy only works on those Biomarkers, it would be great if it works. Please keep us updated.
Also, there a treatment using a liver chemo pump which can help with liver mets.

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@tgoz

Is your husband Microsatellite Instable and or MMR Deficient?
I believe that Immunotherapy only works on those Biomarkers, it would be great if it works. Please keep us updated.
Also, there a treatment using a liver chemo pump which can help with liver mets.

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I don't yet know the details. I know the EGD/EUS turned into a hunt for biomarkers rather than staging, and chemo was delayed a week after the initial consult while they did some further tests to confirm use of Optivo.
What is the liver treatment? Is that different from infusing 5FU for 46 hrs through a power port using a pump?

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I was diagnosed with stage 4 colorectal cancer just over 2 years ago.
I first had a sigmoid colon resection and 7 weeks later, a right lower lung resection for metastasized colon cancer.
Only 1 lymph node involved and otherwise clear margins in both organ locations.
I elected surveillance only with blood tests and CT Scans every 4 months. So far all is good.
No radiation or chemo ever.

Now I have prostate cancer, and unrelated to any prior cancers, that has yet to metastasize from the gland.
For the past two months I have been on ORGOVYX only.
Frequent hot flashes are not good and some hip joint pain that is tolerable.

I have also been diagnosed with hyperthyroidism/ Graves disease and am on a single medication. Side effects are minimal.

I have a fairly good understanding of the colon, lung and thyroid; I struggle to get a good understanding of the prostate and radiation.
I would be happy with 5 more years if nothing further was necessary.
I did everything I could, including taking a gamble, to avoid chemo.
Now I'm trying to avoid radiation.

In spite of it all, I feel good, and have done these things without family or friends to assist.
I am 74, live alone, and without other health implications; i.e. not obese, no diabetes, no high cholesterol, or high blood pressure, etc.

May everyone's decisions be the best ones with all treatment choices successful !
PAUL

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@hardingv

I don't yet know the details. I know the EGD/EUS turned into a hunt for biomarkers rather than staging, and chemo was delayed a week after the initial consult while they did some further tests to confirm use of Optivo.
What is the liver treatment? Is that different from infusing 5FU for 46 hrs through a power port using a pump?

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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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@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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Thanks

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