Just diagnosed: Surgery not an option, looking for hope

Posted by vcsongradi @vcsongradi, Feb 8 10:11am

Went in for my first colonoscopy in December, F age 58. Had negative Cologuards for the last 4 or 5 years. My PCP gave me a FIT test in September which came back positive. Colonoscopy revealed a rectal mass (close to the sigmoid colon junction) she said was typical cancer presentation. Had some abdominal pain and went to ER. PET scan found mets to liver and both lungs, stage IV. Colorectal surgeon told me that surgery, "would not benefit me." Oncologist gave me 2 to 3 years prognosis, said treatment would be palliative and not curative, and surgery, "would never be an option." Started FOLFOX + Mvasi in January; just finished my 2nd round. CEA was initially 58, and is now 46, so that is good news I think. Don't really have a question, just looking for some hope from the stories of other people.

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Profile picture for vcsongradi @vcsongradi

Thanks for all the responses. I enjoy reading about the experiences of others. It does inspire me and gives me hope. I have an appointment for another opinion/possible treatment options at MD Anderson in Houston in March. They only do in person appointments (I live in Indiana) so I will have to go there, but spring is a great time to go to Texas. I lived in Beaumont, TX, for about 5 years during Hurricane Harvey and the subsequent hurricane when I decided I needed to relocate to Indiana for better weather. I am able to enjoy all four seasons here which is fantastic for my state of mind. Before my last scheduled maintenance chemo, it was discovered that I had a lung infection so I was started on antibiotics and the chemo infusion was cancelled. I go in tomorrow for lab, oncology appointment AND infusion on the same day! So thankful for that change in schedule so that means only two days of appointments instead of three like it had been previously.

In answer to some questions above, I have had my tumor genotyped, and it is nothing that can benefit from targeted therapy as the microsatellite instability is low. I was told by the nurse at MD Anderson that their CT scan equipment is much more sensitive and can pick up things that others do not. He also told me that many times cancer is misdiagnosed (?) and it is actually some other type of disorder, virus or cellular disease. Not sure that is the case, so I will find out more in March. He also said there are other possible treatment options, so I'm hoping for positive news there.

I'm in a better state of mind today than I was when I wrote the previous update. I still feel like I'm in limbo when it comes to end of life planning. I don't feel it's urgent to get things in order completely, but it is in the back of my mind. I know many people who die in accidents that don't have any thoughts about their life ending, so in that way I do feel fortunate.

Thank you for your support and encouragement. Your strength and positive attitudes are definitely inspiring to me and hopefully to others at the same time.

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@vcsongradi I have KRAS G12S so there are few options except clinical trials. I may get the genotyping redone and get second opinion also because this mutation is quite limiting for treatment.

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Profile picture for vernscw @vernscw

Vernon Zigler

Nobiletin (NOB) is a flavonoid derived from citrus peel
NOB was found to have anti-tumor efficacy. The present studies on the anti-tumor mechanism of NOB mainly focus on inhibiting the growth and proliferation of tumor cells, inducing accelerated apoptosis of tumor cells, inhibiting metastasis of tumor cells, inhibiting tumor angiogenesis, and regulating the tumor cell cycle and protein expression (Goh et al., 2019). NOB can inhibit human nasopharyngeal carcinoma cell growth and apoptosis through the PARP-2/SIRT1/AMP-activated protein kinase (AMPK) pathway (Zheng et al., 2019). NOB can regulate Src/FAK/STAT3 signaling, reduce VEGF production, and inhibit angiogenesis in breast cancer cells (Sp et al., 2017). Most recently, it has been shown that NOB can combine with chemotherapeutic drugs to enhance the sensitivity of chemotherapeutic drugs and play a synergistic anti-tumor effect. Li et al. (2019) investigated the efficacy of NOB on oxaliplatin using colorectal cancer cell lines.
They revealed that NOB increased the sensitivity of colorectal cancer cells to oxaliplatin chemotherapy through downregulation of the PI3K/protein kinase B (AKT)/mTOR pathway, and NOB promoted oxaliplatin-induced apoptosis in colorectal cancer cells.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2024.1354809/full

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@vernscw
Thanks for your writing: It is imperative to provide authoritative references which assist individuals in balancing their options. Knowing, even just a little of referenced materials, can relieve anxiety and help individuals with conversations with each potential care provider. Jofree

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I put a link to the article from which I got the quote. I don't understand your problem.
https://www.frontiersin.org/journals/pharmacology/articles/10.3389/fphar.2024.1354809/full

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Hi. I am 49 years old and I was diagnosed with a colon tumor and metastases in the liver and a couple of lymph nodes. There is a small chance of surgery if the metastases give in. I have gone through 6 chemotherapy cycles and once in Germany for TACE treatment. The trip to Germany was really tough and I wonder if I got too many toxins into my body for one day. The day after tomorrow, 2.12, I will have another scan and I hope it has not spread. The result of the previous scan was a decrease in the tumor and metastases and that gave me hope. I have also tried to exercise when I can, eat a keto diet, take cold baths, and have high-pressure oxygen treatments. Whatever was done, I hope that we all get at least a little good news in the future and that we can live a long life with our families.

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