Any Chemo Lifers? Incurable Stage 4

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Posts: 488
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
Brain lesion, RO688 trial 18

Posts: 38
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
02.25.2015 CT showed liver and L4 Spine involvement.
03.2015 - 08.2015, folfox + Avastin
08.2015 - 07.2017, 5FU + leucovorin + Avastin for Maintenance
07.2017 - 01.2018, Folfuri + Avastin
01.25.2018 - present, Centuximab + Irinotecan
70 rounds of chemos received (as of 03.2018)
Current CEA: 5.7
MSS, KRAS wild type, BRAF wild type

Posts: 118
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
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
Vegan yoga juicing apricot

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