Quality of life on Folfox and others

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horizon
Posts: 1490
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quality of life on Folfox and others

Postby horizon » Tue Oct 23, 2018 10:14 pm

RichieTheK wrote:I've gone through 7 cycles of FOLFOX with 4 more planned. The First Bite Syndrome is the worst side-effect so far. I have some cold sensitivity but it's not severe. I can drink cold liquids and take things out of the refrigerator bare-handed, but not from the freezer. My hands and feet feel a bit off, but it is easily ignored.


I'm still a little irritated no one told me a thing about first bite pain as a possible side effect. When it happened to me I had no idea what was happening! I learned what it was from people on this forum.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

Cancerclan
Posts: 5
Joined: Tue Oct 23, 2018 11:21 pm

Re: Quality of life on Folfox and others

Postby Cancerclan » Tue Oct 23, 2018 11:40 pm

I had twelve rounds of FU5 and made it 7 with oxciliplatin. I had peripheral neuropathy in my hands a bit and more so in my feet, plus could not drink anything cooler than room temperature. It was the middle of a hot summer in 2015 and I had no air conditioning and could not drink anything cooler than lukewarm. Not fun! One I stopped the oxciliplatin, my neuropathy in my fingers did disappear. I could drink cold again and eat ice cream, yeah! My feet still have it slightly and it has been three years, so it isn’t going anywhere. I use CBD salve on my feet at night which helps me to sleep, and I don’t notice it much during the day.

Kbelo
Posts: 8
Joined: Tue Aug 07, 2018 8:19 am

Re: Quality of life on Folfox and others

Postby Kbelo » Thu Oct 25, 2018 3:27 pm

I've done 7 of 12 rounds of FOLFIRINOX, which is FOLFOX plus Irenotecan. First 2 rounds were the worst, with terrible vomitting that had me back in the hospital for fluids. Since then I've been given 3 different types of anti-nausea drugs which has stopped the vomitting for these last few rounds.

Outside of nausea I get pins and needles in my fingers an d toes, first bite, constipation for 3-5 days post chemo then it flips to diareah which I can get under control relatively quickly with immodium.

I'm in Ontario and I get 5 days of at home fluids (saline IV) once disconnected from 5FU to help flush out the chemo which has been quite helpful as drinking fluids in the first few days is very difficult for me. Having an IV bag to carry around for 4 hours is annoying but beats the alternative.

My biggest challenge is the Neulasta injection. For 2-3 days post injection I am so uncomfortable with muscle, lymph node and joint pain that I cannot get comfortable to sleep or sit. The oncology nurse says eventually my body will become used to it and react less, but so far that's not been my reality.

In terms of hairloss I've noticed shedding and thinning but everyone around me swears they can't see it. I'm losing eyelashes and eyebrows, but annoyingly the hair on my upper lip has real staying power :-)

Good luck to you!
Stage 3B CC - diagnosed at 40
Bowel resection May 2018
28 nodes removed 1 with cancer traces
FOLFIRINOX started July 2018 for 6 months

Cancerclan
Posts: 5
Joined: Tue Oct 23, 2018 11:21 pm

Re: Quality of life on Folfox and others

Postby Cancerclan » Fri Oct 26, 2018 9:35 pm

I had 12 rounds of FU5 and 7 included Oxciliplatin three and a half years ago. I had peripheral neuropathy in my hands, feet, and only could drink lukewarm drinks. I needed to wear gloves to get things out of the fridge or freezer. All faded except for a little tingling in feet and CBD salve helps that. It did not slow me down, and still walk 3-4 mikes four days a week, do aerobics, and all normal activities at age 70.

Fluff Bottom
Posts: 61
Joined: Fri Oct 23, 2015 8:13 am

Re: Quality of life on Folfox and others

Postby Fluff Bottom » Wed Nov 21, 2018 2:07 pm

Lydia, how are you doing? Something made me think of you just now.
10/26/15-Colonoscopy-Mass in Sigmoid Colon
11/17/15 Surgery
Mass is adenocarcinoma with mucinous type components.Lynch Negative
Stage IIIb-T3N1c, 3/13 nodes, High Grade-Poorly Diff to Undiff
12/16/15-Port,began FOLFOX
CEA .8 before surgery
Finished 12 rounds of FOLFOX 5/22/16
5/22/18-Clear CT
9/6/18-CT for possible hernia shows mets
9/18/18 PET confirms mets to lungs, liver peritoneum
10/23/18-Chest CT shows rapid growth of mets

marshmallowjones
Posts: 9
Joined: Thu Jan 03, 2019 9:23 am
Facebook Username: Regina Kennedy

Re: Quality of life on Folfox and others

Postby marshmallowjones » Tue Jan 08, 2019 10:50 am

Kbelo wrote:I've done 7 of 12 rounds of FOLFIRINOX, which is FOLFOX plus Irenotecan. First 2 rounds were the worst, with terrible vomitting that had me back in the hospital for fluids. Since then I've been given 3 different types of anti-nausea drugs which has stopped the vomitting for these last few rounds.

Outside of nausea I get pins and needles in my fingers an d toes, first bite, constipation for 3-5 days post chemo then it flips to diareah which I can get under control relatively quickly with immodium.

I'm in Ontario and I get 5 days of at home fluids (saline IV) once disconnected from 5FU to help flush out the chemo which has been quite helpful as drinking fluids in the first few days is very difficult for me. Having an IV bag to carry around for 4 hours is annoying but beats the alternative.

My biggest challenge is the Neulasta injection. For 2-3 days post injection I am so uncomfortable with muscle, lymph node and joint pain that I cannot get comfortable to sleep or sit. The oncology nurse says eventually my body will become used to it and react less, but so far that's not been my reality.

In terms of hairloss I've noticed shedding and thinning but everyone around me swears they can't see it. I'm losing eyelashes and eyebrows, but annoyingly the hair on my upper lip has real staying power :-)

Good luck to you!


I'm about in the same place as you but I just started #5 Folfox yesterday (still attached til Wed) - it's interesting all the differences you mention being in Canada. My ONC and I have agreed 8 Folfox total were enough - I could not fathom the idea of 12. This decision is due to studies that show it's effective and going any further can create the irreversible Oxy effects. I will switch to a 5FU pill afterwards. We also decided to quit Neulasta and go to the older drug Neupegen (3 shots the week AFTER this week). Neulasta was knocking me down soo hard for days. It'll be interesting to see what separating the Unhook pump day from the Neulasta shot will do.
As far as IV fliuds - it's not offered but you can pay personally for IV Therapy here. I'm in TN.


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