10 the Folfox 5FU tomorrow

buthad the Oxy reduced at seven or eight. Unfortunately, I still have neuropathy and I'm four years out from treatment.  My Oncologist doesn't agree with me, but I honestly believe that my neuropathy was caused by an overdose of 5FU. Its a long story, which I'll cut short. Lets just say, I was on the pump during radiation, 24/7. The pump broke. I was without chemo for 8 hours. The Onc cranked my timed infusion to ever 15 seconds instead of every 60 seconds (or was it 30? So long ago now). It was then that the neuropathy blew up. My hands went purple over night, and my feet felt like they were swollen to the size of balloons. 

So, long story short, I don't think its always the Oxy that causes neuropathy. 

The 5FU was cut short by a week once he saw how bad I looked.

Good luck with your decisions. I live with my neurpathy, but it is not painful, just numb and tingly. 

Tru

I developed neuropathy after 3rd treatment of folfox, dose of oxi dropped to 65%, neuropathy went away, my oncologist told me that I had excellent response, also that was the peak of my radiation treatment, about 17 weeks post is the peak.

After 7th dose of folfox neuropathy  came back, after 8th became permanent, folfox dropped, last 2 rounds on xeloda pills.

Neurpathy is annoying, you kind of learn to live with it, I drop things here and there, things just slip beetwen fingers.

Initial plan was to get at least 8 rounds of folfox and than switch to xeloda, so the plan worked.

Good luck to you!

Went thru complete course of Oxaliplatin and Xeloda reducing the Oxaliplatin for the last two treatments. 

I "coasted" for two months after completing treatment and then the Neuropathy set in.

I'm 95% recovered in my hands and about 75-85% in my feet. Feeling improvement every day.

Good Luck

Had 12 Oxy and 6 months later still feels like my hands and feet are asleep. I think it did some great work because after i dropped it from the pump/avastin trio, new things popped up. Never notice it while im working or walking but after walking for 9 hours my feet feel destroyed. At least the other stuff like cold sensitivity is gone. I doubt the feeling it ever come back but ill take it again if they let me,  I cant use my hands or feet dead anyway.

SophDan2 said:

Question

Have you gone through post treatment testing yet, to see if the you are cancer free? I was told that they do the post treatment testing after 3 months. So, you didn't feel the neuropathy at the end of your treatment, but it showed up 2 months later?

Thx for your feedback Tunadog

After Oxaliplatin and Xeloda treatment I had a PET/CT which was pretty clear. Months latter I had a recurrence in my rectum. I'm now on Xeloda and Avastin.

I get blood test 2-3 times a month and monitor CEA levels. I have had a few PET/CT scans. The Chemotherapy is controlling growth and spread. I will have another scan before the end of the year. Because of the Radiation marker used, you can only have so many PET/CT scans with contrast.

As for my Neuropathy, I can't drive now but the feeling is returning. I had a little at first and got worse for two months before it started getting better. That was around a year and two months ago.

Best of Luck to you 

Hang in there Barry, two more treatments and you get to go to Vegas[well I did anyway]. My feet felt numb/funny, my hands were extra clumsy, and any drink was ordered straight up, no ice. Still it was an exultant feeling, like I'd been set free. I'm glad I was in the moment, not knowing the hurdles to come. The neuropathy went away, as much as I can tell, and I did the full regime. By six months out, most of the nerve stuff had faded, but it was a year and a half before I felt that I was "normal" again, so don't be worried if it takes awhile to fade.....................................Dave

I had 9 treatments of oxaliplatin with 5fu pump, leucovorin, and erbitux started on the third treatment....after the ox was dropped because of h/f neuropathy i had three more treatments with the rest for a total of 12. Then had to stop going to LA every other week and started again with the dr. i had before where i live. Only three weeks in between the time of stopping the la trip and getting treatment here, and now i have had three treatments of 5fu/erbitux and after the last treatment where the pump was used the doctor told me she was giving me a break from 5fu for six weeks and is giving me erbitux alone for the nx 3d treatments. Doc stopped the 5fu because of the neuropathy...I'm stage 4, mets to liver (2), some small ones in lungs and a couple of aortacaval lymph nodes glow......last pt showed nothing new, suv was significantly reduced in all areas yet  nothing has gone, only shrunk a weed bit....i was wondering how long they can keep you on the drugs they know can give you neuropathy...before going to LA I had 8 treatments with avastin, not sure what was in the pump folfox or folfiri, and that didn't do anything...good for me the doc in LA sent tissue from liver met to see what it reacted to and then i was given the immuno drug erbitux which did start things to shrink a bit. The surgeon remarked in my records after the pt scan before the last one that if the suv rate was reduced in all areas surgery on liver and nodes was viable but the once was agreeable and i have been wanting surgery, if for anything to get the crap out of me....the onco isn't on the surgery side either??? Right now i am tired of always hinting of surgery to the onco's and being told i am not a candidate that the chemo will get them..........how long does this go on? Anyone been in this kind of scenario? Not giving up, just need to know who has had what seems like never ending chemo?

dancer2 said:

I had 9 treatments of

I had 9 treatments of oxaliplatin with 5fu pump, leucovorin, and erbitux started on the third treatment....after the ox was dropped because of h/f neuropathy i had three more treatments with the rest for a total of 12. Then had to stop going to LA every other week and started again with the dr. i had before where i live. Only three weeks in between the time of stopping the la trip and getting treatment here, and now i have had three treatments of 5fu/erbitux and after the last treatment where the pump was used the doctor told me she was giving me a break from 5fu for six weeks and is giving me erbitux alone for the nx 3d treatments. Doc stopped the 5fu because of the neuropathy...I'm stage 4, mets to liver (2), some small ones in lungs and a couple of aortacaval lymph nodes glow......last pt showed nothing new, suv was significantly reduced in all areas yet  nothing has gone, only shrunk a weed bit....i was wondering how long they can keep you on the drugs they know can give you neuropathy...before going to LA I had 8 treatments with avastin, not sure what was in the pump folfox or folfiri, and that didn't do anything...good for me the doc in LA sent tissue from liver met to see what it reacted to and then i was given the immuno drug erbitux which did start things to shrink a bit. The surgeon remarked in my records after the pt scan before the last one that if the suv rate was reduced in all areas surgery on liver and nodes was viable but the once was agreeable and i have been wanting surgery, if for anything to get the crap out of me....the onco isn't on the surgery side either??? Right now i am tired of always hinting of surgery to the onco's and being told i am not a candidate that the chemo will get them..........how long does this go on? Anyone been in this kind of scenario? Not giving up, just need to know who has had what seems like never ending chemo?

But I did have ablation on a couple tumors and also had the Y90 theraspheres on the left lobe of my liver.  Maybe you can ask your doctor about those procedures.