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Stage III's

Posted: Fri Jun 05, 2020 12:50 pm
by beach sunrise
Hi, going in Monday for round 8 folfox6. Had discussion with onc about doing 4 more rounds of at least 5FU. He said no evidence was found for that protocol any more, 8 is it and I should just relax and see if/when cancer shows up again. Nothing to do but have patience and wait. Scan was clean last Monday but CEA was 11.4, down from 12. My thought is cancer is still just circling looking for place to set up camp to build a community then 4 more rounds gives a better chance of killing the micromets before they set up to make me stage IV (might be already, who knows). I do have a second opinion in the works but might not be soon enough, Idk. Anyone here still doing 12 rounds?

Re: Stage III's

Posted: Fri Jun 05, 2020 1:49 pm
by ANDRETEXAS
I know there are people who do not take 12 rounds for a variety of reasons, but when did the protocol change? I finished my FOLFOX in August, 2014. My Oncologist and I both wanted to go 12, but the doctor did ask me if I wanted to cut back on the oxi. I told him No since I was handling it fairly well. Andre

Re: Stage III's

Posted: Fri Jun 05, 2020 2:03 pm
by beach sunrise
He said we are being aggressive with 8 considering newest scientific evidence said 6 rounds is just as good as 12. Idk when protocol changed but that was his answer.

Re: Stage III's

Posted: Fri Jun 05, 2020 2:23 pm
by Claudine
When DH was on Xelox, he had 6 cycles, but I found a scientific publication that described the last 2 as not having additional benefits and as more likely to result in permanent neuropathy. Which unfortunately is what happened.
It was not this one, but that gets to the same point:
https://www.futuremedicine.com/doi/full ... -2017-0019

Re: Stage III's

Posted: Fri Jun 05, 2020 2:31 pm
by margiej
I also did six rounds of capeox in 2016. My oncologist thought 8 was likely too much, 4 possibly too little, and that six was hopefully the sweet spot. I do have some permanent neuropathy in my feet and fingertips....maybe 5 rounds would have been perfect?
Margie

Re: Stage III's

Posted: Fri Jun 05, 2020 2:37 pm
by polluxx
Monday, I have FolFox treatment 6 of 12. I’ve also read studies that show that 6 treatments are as effective as 12, however, my oncologist is adamant that I need all 12, so 12 it is. We have had to reduce the Oxiplaplatin by 15% and I’m resigned to the idea that it may need to be reduced farther before I complete treatment.

Re: Stage III's

Posted: Fri Jun 05, 2020 10:28 pm
by beach sunrise
Thanks all of you for your input!!! I really appreciate it. I need ammo to back me up. I have tolerated folfox very well and can do 4 more in hopes cea goes way down. Its good to know you are doing 12 rounds, pollux! Only side effect is cold sensitivity, no big deal at all especially compared to cancer starting a community. I don't even complain about the cold sensitivity at appts because its random in 90 degree plus heat here.