The Colon Club

I want to take an Informal survey between the severity of your cold sensitivity during oxi and neuropathy

1.How bad was your cold sensitivity during chemo?
Did it last all during chemo? A few days a week? Or did you have none.

2.How bad is your neuropathy and how long did it last
I am curious to see if a strong reaction leads to worst or longer neuropathy.

For me
1.It started during the first chemo. I remember they gave me a glass of cold water and halfway through the first treatment I picked up the cup and it the cold hurt already. Also mine never went away during the off weeks couldn’t have a cold drink or go in the fridge without gloves till a few months post chemo.
2. Neuropathy started after treatment 9 we cut the oxi in half for 10 then cut it out for 11 and 12.
Neuropathy got much worst a few weeks post chemo was propping stuff, hands hurt all the time, couldn’t even button my shirt. The hands got better over time (still some pain, numbness, loss of motor control) but the feet legs never got better and are
Painful, numb, burning every day

So since I have the cold sensitivity bad then the neuropathy real bad I wonder if it’s related

I had the cold sensitivity immediately on my first round. I was scared to death and a nurse offered me a Sierra Mist from the fridge. After I had a few sips my chest hurt really bad and I kinda freaked out. When I mentioned it she just said, "oh that's the cold sensitivity" and took my soda away. I was miffed. So far (after 4 rx) the cold sensitivity lasts 3-4 days before it starts to be more normal. After the 2nd half of the week after chemo, I can even eat ice-cream.

The neuropathy I got after round 2. I got up that morning feeling okay, but when I went to wash my face my hands lit up w/pins and needles even though the water was warm. After that I had that feeling for about two days. The next round lasted about four days (again set off when I washed my face). This last round, I didn't wash my face with my hands (I may be a slow learner but I'm not a NO-learner). I used a face cloth that didn't get my hands wet at all and have been fine. No pins and needles, just the occasional twinge and tingle along w/a general feeling of weakness in the hands. Also maybe worth mentioning, during rounds 2 and 3, my hand got paralyzed for a few seconds. It was like a muscle cramp without the pain. I've mentioned it and been told to keep an eye on it (my favorite phrase )

Anyway, that's been my experience so far. Hope it helps!

Hi all,
My cold sensitivity was intense and immediate. It also lasted for a while.

Neuropathy was pretty much the same, though it is better. I had it in my hands and up my calfs for a while. It is now mostly gone from my hands and only in my feet.

I had horrible cold sensitivity and it lasted 6 to 7 days. I had it in my eyes, in my jaw (that got better after a reduction in dose), in my everywhere. I ended up with neuropathy in my feet none in my hands and I just noticed (after being off oxi since last October) that my big toe isn't numb anymore so hopefully with more time the rest will go back to normal to.
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I also need to include that I only had 6 oxi treatments. My onc. said the neuropathy was getting to a point where he wanted to switch me over to irinotecan.

I had oral, ocular, and nasal cold sensitivity pretty bad for days 1-5 of each treatment, then by day 7 I was mostly back to normal. With my skin and extremities it was bad days 1-3 and back to normal by day 5.

Neuropathy for me is not bad at all and didn't occur until treatment 9, just a feeling of sand in your shoes and it comes and goes. Hasn't changed much since we dropped the oxi, still spend about 50% of the time with the feeling and 50% without. Also sometimes feels like there's bugs crawling on the top of my feet and around my ankles. I keep looking down expecting to see flies or ants on there, but nothing. Definitely a wierd one

I'm on my second series with folfox. First time (last summer and fall) I started out with really mild cold sensitivity which by round 8 had increased to nearly the enitre 2 week period.

I had a perforated bowel and chemo interrupt due to surgery and wounding for next 2.5 mos.
But neuropathy onset started about one month after surgery, in both hands and feet. It was painful at first, but eventually just felt like my hands and feet are asleep. This continues to this day.

Now after 2 complete rounds of folfox ( with syringe pushes of 5 fu instead of the infusion pump) cold sensitivity is very minimal, and neuropathy slightly worse, particularly in feet. My onc says pushes of 5 fu may reduce toxicity of oxi.

What is interesting to me is how the neuropathy starts up after the chemo stops. In my case, a month later. In any event, other chemo regimens have not worked, so I can live with the neuropathy if otherwise good results.

I'm on my second series with folfox. First time (last summer and fall) I started out with really mild cold sensitivity which by round 8 had increased to nearly the enitre 2 week period.

I had a perforated bowel and chemo interrupt due to surgery and wounding for next 2.5 mos.
But neuropathy onset started about one month after surgery, in both hands and feet. It was painful at first, but eventually just felt like my hands and feet are asleep. This continues to this day.

Now after 2 complete rounds of folfox ( with syringe pushes of 5 fu instead of the infusion pump) cold sensitivity is very minimal, and neuropathy slightly worse, particularly in feet. My onc says pushes of 5 fu may reduce toxicity of oxi.

What is interesting to me is how the neuropathy starts up after the chemo stops. In my case, a month later. In any event, other chemo regimens have not worked, so I can live with the neuropathy if otherwise good results.

Cold sensitivity started almost immediately, but has subsided seven months out. Neuropathy started later but is still present, I will be going to podiatrist tomorrow because I mashed my big toe and the nail isn't growing. I didn't even realize that I had injured it. My onc. gave my the choice of continuing my last two rounds with oxi or not and I chose to continue. Will soon be going back for maintenance and am not sure what to do about oxi.

I had a total of 31 rounds of oxaliplatin, 10 the first time, then after recurrence, another 21 before I had a reaction to it. I had the cold sensitivity in my mouth and hands about 5 days each round. I never had that much of a problem with my feet, but I always wore socks around the house in the winter, anyway.

I had no neuropathy in either my hands or feet throughout the oxi- treatment. I told my onc I thought it was because I have always had poor circulation in my hands and feet and perhaps the oxi- never really got to them. (Put my hand or foot next to a normal person's, and my fingernails or toenails are always noticeably bluer.) I had one area in my right thigh that constantly bothered me, and we did MRIs a couple of times to see if anything was going on there. My onc said that could be some neuropathy, and it has virtually disappeared since discontinuing oxi- in December.

I had two episodes of hand paralysis just like starbuck30 mentioned, then never had it again.
Go figure.
Dianne

1.How bad was your cold sensitivity during chemo? Did it last all during chemo? A few days a week? Or did you have none.

My cold sensitivity would be full on as soon as I was done with the infusion. Mine lasted about a week.

2.How bad is your neuropathy and how long did it last

my neuropathy symptoms started more after I finished the radiation portion and it was in my fingers and my toes. I still feel it in my toes sometimes, but i think it is going away.