Quality of life on Folfox and others

[horizon]

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.

[Cancerclan]

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]

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!

[Cancerclan]

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]

Lydia, how are you doing? Something made me think of you just now.

[marshmallowjones]

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.