Just diagnosed: Surgery not an option, looking for hope

Hello everyone! Thank you for the encouragement, prayers and positive stories. I continue to improve! My last CEA on May 20 was 6.4, and I will begin chemo round 10 on Monday. My hair has been thinning which isn't fun, but it is a side effect so I deal with it. I have been having neuropathy in my fingers (numbness), so my oncologist adjusted the dosage of Oxaliplatin, and because of increased fatigue she stopped the 5-FU bolus that the nurses give before attaching the ball. I did finally get an answer to why surgery was not an option initially: it was 1) because of the metastasis to liver and both lungs, and 2) I would have to wait 6 to 8 weeks following surgery before starting chemo and they wanted to start chemo right away to stop the spread. My second opinion rectal cancer oncologist located in Moffitt Cancer Center in Tampa, FL, agreed with the plan that I'm currently on. My oncologist here locally did talk about maintenance chemo starting possibly in July after 12 rounds of chemo, and my next CT scan to see exactly how the tumor and mets are measuring. Keep praying and offering encouragement! Sending love and appreciation to all of you!

Hello, All -- cancer is considered stable as of the CT in June, so was switched to maintenance chemo and currently the cancer remains stable. Latest CEA was 2.6. I ended up switching oncologists because I wanted to move my oncologist appointments to every 4 weeks instead of every 2 weeks, and she wasn't comfortable with that. My new oncologist is just fine with every 4 weeks as long as the cancer remains stable. However, I'm feeling burned out. I am glad that the cancer is stable, however, I'm still getting infusions and 46 hour 5-FU ball every 2 weeks. Still no mention of surgery. Oncologist says that the chances are high of cancer returning to growth and spreading within 1 to 2 years, then will try a different chemo (FOLFIRI I think he said) with fewer side effects than FOLFOX. I'm having a hard time accepting that I will have to continue treatment (either maintenance or another chemo) every 2 weeks for the rest of my life. The rest of my life! I feel trapped at times. I feel like I can't "breathe" at times. I find that my mental health is becoming more affected lately. I suppose I can just stop any and all treatment at any time, and to do that at this point I think wouldn't be a good idea since the cancer has responded positively to the treatment. I guess I'm not so sure I will continue with another type of chemo if it starts growing or spreading again. I'm not getting "rewarded" in a very satisfying way now that the cancer is stable because I still have to go to all these damn appointments. The infusion center is fighting me about getting lab/oncology visit/infusion all on the same day which would shorten my appointments to 3 days per treatment week instead of 4 days. I should be feeling glad that my cancer is stable instead of being more irritable and frustrated that nothing on the outside of my body has changed.

I have adenocarcenoma. Started in appendix. Moved to omentum matastesized aggressively. I started folfox and avastin regimen every 2 weeks. My CEA started at 20 and now after 9chemos it is 5. My dr Sid cea is more accurate than ctscan that can be vague. My dr said 2 yrs in the beginning. Grade 4 colorectal cancer. I am now hopeful for debulking surgery after 12 treatments. Very iffy. New ctscan tomorrow. S long as the cea keeps going down chemo is killing cancer. Be hopeful. Every person is unique and miracles happen.

@vcsongradi hi did they ever offer debulking surgery? What kind of cancer do you have? Have you taken advantage of palliative dr and social worker usually offered ? I talk freely with social worker that comes during my chemo. And make regular appointments with palliative dr to ask questions and talk about side effects. This is really helpful. I have had anxiety disorder for 45 yrs. And seem to be ok with my anxiety medicine. Do you have someone to talk to?

Sorry to hear about your case. You should try options, I'm sure you would have done that already. Were you diagnosed from CT scan in ER with abdominal pain or colonscopy from FIT test? Dont think they do PET scan in ER, do they?

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

Please seek a second opinion. Give serious consideration towards going to Memorial Sloan Kettering in New York City. They have a team of experts that will collaborate and offer options. I was recently diagnosed with an extremely rare Appendiceal carcinoma and had a large tumor removed. My surgeon was Dr. Pappou who is a very skilled surgeon. Make an appointment with him. I had 5 hours of surgery on a Friday afternoon in August and went home Sunday afternoon. I am under the care of a Medical Oncologist now. Please, please do not give up.

So sorry you are going through all this…I was really freaked out when the surgeon said my tumor was too big to operate, as i really wanted rid of it pronto…but she said treatments can shrink tumors and make way for better and safer surgery…. So, i did immunotherapy 5x and the surgeon planned the operation because the meds had shrunk the tumor…turns out, the meds killed it and they found no cancer anywhere, thank heaven ! I’ve heard that some chemos can do something similar…whatever, the waiting time isn’t fun, but sometimes things turn out better over time than you could ever have imagined.best of luck !

Hi, I am offering my thoughts. First, that is what the oncologists would say to surgery, not an option or let's see. I was diagnosed with stage IV colon cancer with large spread to peritoneum. After 11 rounds of FOLFOX, I was deemed stable and ready for cytoreduction surgery and HIPEC. Coming out of 12 hours surgery there was no evidence of disease left. Felt great, despite the challenges of post surgery recovery and later a much more dramatic surgery due to colon/small intestine rupture. Then 4 month later 2 metastases were found in my liver which after 4 rounds of FOLFIRI+avastin were ablated. I am now 2 months in with no sign of disease. Cancer life is a roller coaster, some really good days and some shitty. You have to hang in there, life is still good despite dr appt and pain. Your family loves you and they deserve to have you in their life. I go for walks in nature, I go meet friends, anything to make me feel normal. Please take care and wish you the best!

@vcsongradi
Hi I am colon cancer stage 3B. Just wondering if you have the molecular analysis of your tumor. (also called Genomic or Tumor Markers) Then you might be able to get Targeted Therapy. . i.e. the type of chemotherapy could be different based on which mutations they find in the specimen (either from biopsy or surgery). If you have KRAS G12C or D, there are specific drugs. Unfortunately, Targeted Therapy is not available for all mutations. If you are dMMR (deficient mismatch repair also know as Microsatellite Instability) then you could get immunotherapy. dMMR is less common, only about 5-15% of colorectal cancers. But certainly worth asking.