FOLFOX and cold sensitivity

[toddswife]

My husband will be starting 12 rounds of FOLFOX next week and I understand one of the side effects is cold sensitivity. We have a trip to Germany and Austria booked in January and I am wondering if that is going to be too hard with the cold issue. We have 2 young children who would be along on the trip and a fair amount of time would be spent outdoors, we were even planning to do one day sledding. Are we insane for even considering this? I just wanted to hear from others how much the cold sensitivity affects them so we can figure out if we should switch the trip to a warm weather destination instead. Thanks!

[Coppercent]

I was only effected by the cold the first couple of days after infusion. On my off weeks I did not have any issues with the cold. If I were in your position I would continue on with your plans. I refused to let cancer stop me with any regular activities.

[horizon]

For me the cold sensitivity was more annoying than debilitating, but near the end of my treatments I was microwaving tap water because I thought it was too cold. I didn't want to travel anywhere either. But plenty of people have travelled while getting chemo.

[DBF]

Hi Todd's wife (I'm a "Todd's wife" too!)

I'm three treatments in, and the cold sensitivity lasts around four-five days after treatment for me. With weather, I'm good with a scarf over my face and weather-proof gloves on my hands. My lips and tongue get numb if I eat or drink anything cold, but like others have said, it's more of a nuisance- and it fidnt stop me from earing an ice cream sundae last night). With the right gear, I would definitely travel somewhere cold. Most of the time, you'll be inside, in heat, drinking warm things. I think a trip to a warm climate might even be harder, with cold-water swimming, air conditioning, cold drinks, etc. that's what my onc told me when I complained about doing FOLFOX in the winter- she said people complain more about the cold sensitivity in the summer.
Anyway, I hope he has few side effects from treatment and hope you have a great trip if you decide to go!

DB

[chemo sabe]

I think you are going to have to play it by ear. Each of us is different. None of us is going to react the same way. Also remember that not everyone gets a full dose of Oxaliplatin. Personally, I was very happy that I was on chemo in the spring and summer. It really bothered my fingers/hands. If you have trouble holding on to cold stuff, like making hamburgers or meatloaf, taking frozen stuff out of the freezer, washing the car, etc, I don't know how much fun sledding would be. Some folks actually have trouble even breathing cold air. After you know how he feels, you can also discuss with your onc having a reduced dose of Oxi on the infusion day prior to your planned vacation.

The other thing that you will not know until chemo is started is your husbands overall reaction to chemo. Cold sensitivity is not the only possible reaction to chemo.

[Mastan]

Based on my experience the trip is doable if cold sensitivty is the only issue. The sensitivity can be manifest in a variety of ways. I had FOLFOX during the winter. When my face was exposed to very cold temps it felt like needles. Same was true with the finger tips. Those symptoms are annoying but not dangerous. However, i tried riding my bike in the cold and I developed a rather severe spasm of the diaphram which made me feel as though I was suffocating, that was frightening. I discovered however that if I biked slower such that I was taking in less cold air I could avoid the spasms. So with proper protection from frigid air your husband should be fine. Having said all that I had to stop the treatments after 8 cycles because it began causing severe back spasms that affected my breathing and had nothing to do with cold because it happened indoors. I assume your husband would be on a break from chemo for the trip so that should help as well.

Mark

[chemo sabe]

PS - just a side comment that your getaway is going to have to be well timed. Folfox regimen has an infusion on one day, 48 hours on a pump and then back to the clinic to disconnect that pump. 12 days later, you are back in the chair with another infusion. One of the other problems with planning is that an infusion could be delayed due blood counts or other physical reasons - this could throw everything off.

[justin case]

I know chemo is a very important deterrent to cancer progression! I will bet if you talk to your doctor, he or she might be in agreement, that a short break in chemo, may be acceptable at that time. JMHO.
Regards,
Michael

[debzak]

I hated the cold sensitivity. I had to drink only warm drinks and couldn't even take the milk out of the fridge. I would suggest dressing appropriately. I found once an extremity (ears,,fingers, toes) got cold then tingled and it was hard to get that feeling to go away. So I got shearling boots and wore gloves to most tasks, like getting stuff from the fridge. It is annoying. It feels a little like pins and needles. Don't touch any snow.. It got me out of shoveling last year

Debbi

[JudyM]

DH had cold sensitivity most of the time on the folfox (started maybe 2-3 sessions in). It was .. annoying, sorta painful but in short duration. He had to use a pot holder (we didn't have an oven mitt) to get anything from the fridge or freezer, and found eating/drinking anything cold wasn't easy and hurt his throat. He still sometimes had ice cream, but very carefully! only drank room temp or warmer stuff. For quite a while the sensitivity was only a few days around infusion time, then eased up; later it kinda stayed. When grocery shopping, when it was acting up, I'd be the one to get the milk out of the dairy case or any frozen stuff. The accompnaying neuropathy has eased up, but unfortunately a year & a half later he still has some of it left.

For winter, we just made sure he was well protected to keep everything warm, and he had one of those ski mask things for his face if it felt like he needed that too. Mostly it was his hands.

[handicap18]

The cold sensitivity sucks. In my experience the first 3-4 treatments it lasted 2-3 days after disconnect, then lasted progressively longer. By treatment #10 it was lasting about 6-7 after disconnect.

I did find that while on the pump and the first day or so afterward if it was cold out I was much colder than I usually was, especially my hands and feet. There were a few days where I was sitting outside watching my sons baseball game and there was a slight mist out and it was about 50*F and I was freezing. Normally that kind of weather doesn't bother me.

Everyone reacts differently so its hard to tell how your husband will react.

I do, however, concur with the other poster who suggested telling his onc about your trip and he/she will more than likely agree to giving him an extra week off if the trip is on a chemo week. I've had a few extra week breaks for trips or holidays and it doesn't make much of a difference. In fact my onc suggested I take an extra week this month so my treatments didn't fall on Thanksgiving or Christmas week.