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Re: Any Chemo Lifers? Incurable Stage 4

Posted: Sat Sep 23, 2017 10:33 pm
by jdepp
Hi Nikmakmom,

I'm in the same boat. I've been on chemo or clinical trials for 8 of the last nine years (I had one year of NED). My personal approach is to find a level of treatment that is physically & psychologically tolerable. Sometimes that's high, sometimes it's low, but I always want to be in charge of my own chemo dosing. y oncologist has been with me on that. Right now I'm on a 50% Stivarga as II look for the next clinical trial.

Re: Any Chemo Lifers? Incurable Stage 4

Posted: Sun Sep 24, 2017 10:54 am
by boswind
Dear jdepp,

Thank you for sharing treatment experience of your long journey. It is great to know you always want to be in charge of you own chemo dose. You know your body better than your onc.

One concern I always have is: when chemo dose is reduced I am afraid the chemo would be less effective and may cause drug resistance sooner. Could you tell how I could change such thought?

Thanks

Boswind

Re: Any Chemo Lifers? Incurable Stage 4

Posted: Mon Oct 09, 2017 2:33 am
by henry123
BIG ROB 69 wrote:Hi. Read my sig. I believe we owe it to life to keep on fighting the good fight. Plus, I can't stand the thought of leaving my boy, even though he's gonna be 21, and looks like he's gonna be a good,strong man. Besides, it's easier to die than it is to live, and it's in the hard that makes it worth the fight.


Big Rob,
Seeing the cea levels it seems as if Keytruda is working.
Best wishes

Re: Any Chemo Lifers? Incurable Stage 4

Posted: Sat Jan 12, 2019 12:44 pm
by Pyro
I’ve been off and on again with chemo since 2015, currently about 6 months into chemo for life. I get FOLFURI with vectibux every two weeks, forever. My CEA is creeping up, now 10ish and I’ve been through at least 3 major surgeries, all started at the ripe age of 38, and thE doctors have been aggressive and I have no tumors showing on scans. I have round 71 on Monday and I’m tired of it, quality of life is low and I usually feel like crap, anyone else just tired of it and ready to move on? I feel bad asking because there are people way worse off than I am, but I’m tired of being sick and tired.