Any Chemo Lifers? Incurable Stage 4

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Posts: 487
Joined: Sun Sep 28, 2008 7:53 pm

Re: Any Chemo Lifers? Incurable Stage 4

Postby jdepp » Sat Sep 23, 2017 10:33 pm

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.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16

Posts: 32
Joined: Fri Apr 11, 2014 12:04 pm

Re: Any Chemo Lifers? Incurable Stage 4

Postby boswind » Sun Sep 24, 2017 10:54 am

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?


01.24.2014 Male, DX @54 Rectosigmoid Cancer, MRI: T3N0M0
03.19.2014 Completed 5-week Radia+Xeloda
05.07.2014 Had surgery to remove 13cm sigmoid-colon and rectum.
02.25.2015 PET/CT/MRI scans show liver mets and L4 Spine involvement.
MSS, KRAS wild type, BRAF wild type
Mar 2015 - Aug 2015, folfox + Avastin
Aug 2015 - Jul 2017, 5FU + leucovorin + Avastin for Maintainance
Jul 2017 - Present, folfuri + Avastin
Current CEA: 5.6
Total over 50 rounds of chemo treatment received

Posts: 29
Joined: Sun Oct 08, 2017 3:25 am

Re: Any Chemo Lifers? Incurable Stage 4

Postby henry123 » Mon Oct 09, 2017 2:33 am

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
46yo M
5/16 lap AR 14/21 L nodes +ve
cea 80
6/16 Ext Rt hemicolectomy
7/16 Capox 9 cyc
9/16 cea 2
1/17 cea 550
pet shows mets in lung & peri
iri+ avastin failed
3/17 cea 10577
msi-high, lynch+ve
4/17 regro failed
5/17 cea 28800
5/17 CT increase in size of mesentric nodes , new onset of multiple nodules in liver.
6/17 Opdivo start
7/17 cea 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT shows all clear exc a nodule in Lung. liver normal
opdivo to continue
Vegan+ yoga +juicing +apricot seeds

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