Chemo for stage III colon cancer with BRAFV006 and MSS
Hi, Like everyone, I sure didn't expect to be here. Had surgery on 22 Dec. 2022, mass removed, 3/22 lymph nodes positive for metastatic. I'm 65, female, in pretty good shape. My fears over FOLFOX are numerous. I'm only just now feeling 'normal' again after having my appendix rupture (blocked by tumor) n the ER, then sent home with the ruptured appendix, then going back to the hospital (a different one), having the surgery, getting the diagnosis on 28 Dec. 22. I lost 18 lbs. just from the appendix fiasco, so I'm worried about excessive weight loss. I'm ~ 115 lbs. now. Over 40 years ago, I said that if I ever got cancer, I would never get chemo or radiation. They are both pure poison that kill all cells indiscriminately. So, now that I'm faced with life or death prognosis, I don't know how to get over the huge fear of chemo. I feel like the chemo will kill me before the cancer. I worry my frame of mind, beliefs about theses cancer treatments might doom me to terrible side effects and suffering. Any suggestions?
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Chemo sucks but right now it’s probably your best chance I’m on CAPOX for duodenal cancer it isn’t fun but I don’t want cancer back I highly doubt you’d have radiation if you have had your tumour taken out unless you got a blood cancer too Please check with your oncologist or health team about your best options best of luck no matter what you choose as it’s your life take care how you go
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Welcome to the site. I am trying to figure out a way to say this without sounding rude or snarky, but honestly, anything you thought about chemo 40 years ago is simply outdated and irrelevant to your current situation. We are sort of Twinsies as I also had stage 3 colon cancer with three lymph nodes positive. I did Capox ( see user name) , which is the folfox pill version, and next month will be my four year DX anniversary. I have been NED for three years. I strongly recommend you undergo chemotherapy with the modern drugs. You have an excellent chance of survival for many, many years, including a future that never involves cancer again. I wish you the very best of luck.
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1Finngal: I had a similar diagnosis, and thought long and hard about chemo. It might be helpful if you insist your oncologist give you specific statistics about your chance of recurrence with or without chemo. Chemo is not a panacea, it works for some and not for others. You can also research your own statistics at sites like pubmed, but the older studies can be much more pessimistic than current realities.
There are also non-chemo strategies you can pursue to increase your chances of survival, from having healthy vitamin d levels, to taking cimetidine, to various supplements and exercising regularly.
In the end, I decided to do chemo, first "Capox," and then capecitabine as a monotherapy. For some, chemo is easy. For me, it was not. In retrospect, I wish I had not done chemo. The majority of people who stay on this board have had chemo and naturally endorse it. But the decision is very individual, and you should research, search your mind and make you own decision.
Oh, and by the way, research demonstrates that attitude, whether good or bad, has no statistically significant impact on survival. I have always had a pretty crappy attitude, and I have survived so far. And I do not think your beliefs about chemo will affect your side effects or success rate.
I wish you the all the best in addressing these tough decisions.
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1finngal, your concerns are reasonable, chemo can be awful, luckily for me Folfox was relatively mild and tolerable. Unluckily, for me it didn't stop mets from my liver, twice. Luckily, they could and did scoop them out, surgically, and I'm 8+ years NED since. Did chemo do anything for me? I couldn't say, the onc/surgeon suggested the micro-mets were already in the liver, were they elsewhere and stopped by the chemo? i'll never know. I know it was two years before my hands and feet felt near normal again, my immune system is quite strong again, at nearly 65, and I don't regret taking the treatments. It's a hard gamble, and only you can make 'the call'. People here have survived because they did the radiation or chemo. Toxic substances can kill more dangerous conditions, many treatments use things that are poisonous at higher levels, I wouldn't let that basic line of reason, formed 40 years back, stop me from trying a thing that may help, here. Good fortune to you, either way you decide.....................Dave
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Thank you, Dave, for responding and sharing your experience with me. Right now, I'm leaning toward starting the FOLFOX and just taking it one treatment at a time to see if I can tolerate it without too severe side effects. The ones that worry me the most are those that can be permanent, like the neuropathy. I also worry about losing so much weight, feeling so bad, that I lose the will to live. Best to you!
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Thank you for responding and sharing. I have found more statistics from researching online than I have from either of the two oncologists I've consulted. They are not encouraging. Sadly, it's known now that over 50% of ALL studies are BOGUS and driven by $$ more than by science. So hard to know what to believe. I'm thinking I will probably start the chemo and just try them one by one, knowing I can stop at anytime. I've always taken supplements, exercised, prepared my own meals from scratch, no GMO's, mostly organic, etc. I thought I was doing everything possible to avoid being in this situation. Admittedly, when I was young and stupid, I did smoke (quit in 2004) and drank excessively at different times, which I no longer do. Most know that the water, the air we breathe, the food we eat, the clothes we wear, - everything has been poisoned to keep the population weak and to control the population. I wish the best for you, and thank you, again, for your response.
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Mine was found before and after the cecum, where the tumor had blocked my appendix, so they removed a little less than a foot, part small and part large intestine, including the ruptured appendix. at that site. In 2010, I had about a foot removed from my lower colon, probably similar to your surgery, because of a prolapsed rectum. You don't say how you responded to the 1st treatment. I'm guessing they get worse as you progress, - from the buildup of the toxins? At any rate, I wish you the best as you go thru it, and that you are spared from nasty side effects and permanent debilitation. Thanks for sharing!
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I wonder why they didn't offer me the pill version. Also wonder about the pros and cons of each. Did you have any high risk markers like the BRAFV006E or MSS? I question that chemo prevents new cancers, as it is known that both chemo and radiation are carcinogenic and people often develop new cancers after having been successfully treated earlier by either method. Maybe those were just the older chemo drugs? I'd need to research. Thank you for responding and the good wishes. Thinking I will start the chemo and just take them one treatment at a time, knowing I can stop whenever I want. And, no, you don't sound rude or snarky, - just matter of fact. 😏 Best to you!
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1Finngal: From my perspective, looking back or guessing why is of little value, unless it helps you to live a more healthy life in the future. It is interesting, from my research, drinking, post-cancer, has no real effect on the chance of recurrence. If you dig deep, there are reliable statistics, but every situation is different, including which side of the colon the cancer occurred. . . I know nothing of your mutations, but you really might want to see if capecitabine is an option--taking the pills yourself allows you some control over the process. Chemo hit me strong and I never got above 50% of the suggested dose. The pills allowed me to tailor the process. Best of luck to you.
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I am new on here. I was diagnosed with colorectal cancer in November. On December 9th I had part of my colon removed. Two weeks later I wasn’t feeling well and went to the er. Within 8 hours on December 23rd I had a second major surgery. The some of the staples from the first surgery opened and bile was going in my pelvis. January 31st I had my first is eight chemo treatments. So far, all is well no side affects. Tomorrow I get my second and I am told that as I get more chemo the side effects will start. Not sure what to expect.
Right now I am still wrapping my head around my colostomy. That in addition to my cancer diagnosis is life changing. I am told you will get used to it. But for me wearing cloths that I used to wear are a problem. Not sure what to do when I go swimming and other activities. I just turned 70 and this whole thing is a bummer.
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Hi John, a colostomy certainly is a lifestyle-altering change, but we have folks here who have adjusted well to 'the bag', and hopefully they'll stop in to tell their tales, though you may be able to locate those prior conversations. From what I've heard, there's many tips and techniques that are helpful, and choices as to the better supplies to be used, plus dietary info. All this can be found here and other sites, it will just require some searching, and time of course will aid in 'normalizing' the use of it. Good luck to you...........................Dave
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Hello,
I am stage 3 with 2 cancerous lymph nodes. I took 6 rounds of capox and finished in 12/30/22. I am currently in my last week of oral chemo and proton therapy. I am a 45 year old male.
Honestly, it is not the end of the world. I had one bad episode on capox, where I got severely dehydrated and they had to pause treatment. I dropped 20 lbs in 10 days when that happened. I gained it all back in a couple of weeks. I've been able to keep working and I manage to go the gym 5 days a week (except of course when I got dehydrated). After the dehydration, they reduced the dosage of the capecitabine.
My biggest side effect is neuropathy in my hands and feet. I tried wearing cold gloves and socks, but I still have numbness. My oncologist says it should go away. It's not terrible, but it is there. When I told my oncologist about the numbness, he reduced my last dosage of Oxaliplatin.
In my case, I am glad I followed the oncologist's recommendations. I wish you the best and hope that whatever you choose works out good for you.
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Hello John,
I've had an ileostomy since early july. I've gotten used to it. I use hollister supplies. The biggest negative for me is having to get up at night, usually twice a night, to dump it.
My advice is to just make sure you stay hydrated. I use Hi-Lyte unflavored electrolyte drops in my water.
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I never stopped working when I took Capox. That is one of the reasons I chose the pills over the infusions & bag. I wound up with stage four diarrhea but that was more annoying than harmful. Despite that I was never dehydrated as I kept literally gallons of extra strength Pedialyte in my office and made sure that I replace the going in to match the going out I needed my job and it turned out to be a great choice as I got through chemo with just the common numbness in my feet.
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To CAPOX Dude
You we’re very lucky to do that. I ended up in the hospital for a week due to diarrhea and vomiting. I’m waiting for an appointment to have a port put in and will try to continue my chemo avoiding stomach issues due to Whipple surgery on my duodenum Hoping this works if it doesn’t I’ll just do the passive monitoring as the duodenal tumour was completely removed and 2 out of 14 nodes had cancer present so it’s a 3A cancer score and hoping for the best not just for me but everyone else out there battling for their health and sanity
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Best of luck with the port. Always another angle .
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