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Cold sensitivity

Inspired2013's picture
Inspired2013
Posts: 45
Joined: Sep 2018

I had my third treatment of FOLFOX yesterday for stage IV colon cancer. The cold sensitivity wasn't too bad the first two times but this time it's much worse. Even room temperature liquids are causing a reaction. I'm order not to make my fingers and toes react, I have to be wrapped up like a mummy almost. Does anyone have any suggestions for dealing with the cold sensitivity? I'm hoping for some ideas to make it more tolerable before winter sets in.

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

I wish I had a suggestion. Sadly, it's probably going to get worse as you go along. It's particularly hard in the winter because things that are not normally cool, like door handles and taps, are just cool enough to set off a reaction. My main memory from that time is constantly touching thangs that gave me a shock that I wasn't expecting and crabbing away to myself when it happened. I found it to be very stressful.

Jan

abita's picture
abita
Posts: 569
Joined: Dec 2017

Not sure if the room temp drinks hurt mouth or throat. For me, I would hold the room temp liquid in my mouth for a second to warm up then swallow. 

Annabelle41415's picture
Annabelle41415
Posts: 6077
Joined: Feb 2009

Oxi is a nasty drug and hard to get used to, if you can.  It gets progressive so it's harder to tolerate the more you take it.  It got to the point where drinking and holding anything cold was almost intolerable.  Going into the grocery isle was painful.  Make sure you talk to your doctor if you get numbness in your hands and feet that don't go away.  That is a big side effect of that drug.  Wear gloves whenever you can.  Just make sure you let your doctor know of your concerns.  Some people can tolerate it better than others.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 812
Joined: Apr 2017

I recall reading that some nutritional supplements can help with chemo side-effects.  I really do not recall which, but it might be worth researching.  

Annabelle41415's picture
Annabelle41415
Posts: 6077
Joined: Feb 2009

My Folfox treatment was not good on my system but everyone is different.  No supplement or herb helped me curb the neuropathy.  There were many that gave advice on another board but none of it worked.  I'm not a supplement person but tried everything and for me it didn't work.

Kim,

Woodytele
Posts: 163
Joined: Apr 2017

Alpha lipoic acid.  comes in a pill form, about $12 on Amazon, it may help. My onc recommended it.

JanJan63's picture
JanJan63
Posts: 2476
Joined: Sep 2014

For the record, I tried drinking something cold while I was getting the Folfox IV and it didn't work.

Jan

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

I would use the same technique, very, very, very small sips and warm up in the mouth (even if room temperture, remember room temperture is still going to be colder, buy a lot, than your body)

There were days I would sleep with gloves and a scarf if it was particuarly bad.  Gloves a must when going into the fridge for me.  

abita's picture
abita
Posts: 569
Joined: Dec 2017

I had my second folfox yesterday and got some cold sensitivity. I had also had an honest talk to my doctor where I had said that I was devastated and dropped into despair with my recurrence. And he let me know that with only two small spots, that even though bad location, there is still hope, and that relatively speaking, ood prgonosis. So, I was very happy leaving the infusion suite, full of hope. I forgot their was a couple on the elevator. I started touching the various metal objects on the elevator to see how bad the cold sensitivity is with this round, Then I saw the couple. they were staring at me like I had two heads. I awkardly smiled, and then realized that probably made it creepier. :) I had forgotten how bad that first bite syndrome hurts! And that I have to wear slippers in my home because the floor hurts my feet and it isn't even that cold.

Annabelle41415's picture
Annabelle41415
Posts: 6077
Joined: Feb 2009

It's going to be trial and error.  Mine was picking up a jar of pickles in the fridge and dropped it accidentally because it hurt.  You try to go about your day being as normal as you can and then it hits you - when you least expect it.  Glad you feel better about the appointment.  If your doctor is confident, then you should be too.  Dropping things in the grocery isle was a big thing too for me.  Ugg that is such a hard drug.

Kim

p14175
Posts: 11
Joined: Oct 2018

Hi, I am new here so don't beat me up! Smile

I started becoming sensitive to cold right after my colon cancer surgery (8/18).  Here in southern AZ the temps have been over 90F during the day; chances are you would find me bundled up while my DH is running around in shorts and sandals. The oncologist is recommending Xeloda for my treatment. From what I gather this will probably make me even more sensitive to cold.  I am in the process of gathering information and supplies (ideas to make life more comfortable, gloves, sweatpants, supplements that might help, etc.) for the chemotherapy.  I appreciate all the handy hints. Maybe sometime in the future I can add a few of my own.

 

NewHere's picture
NewHere
Posts: 1066
Joined: Feb 2015

 Welcome.  Sorry you have to be here.  And I won't beat you up :) 

Throw a scarf on the list in case you are in Air Conditioning.  For me there were some days that were more sensitive than others, so I did not use all the things all the time.  But definately keep an eye out on the fridge.  Usually it would ease for me a bit more also during off weeks.  The hook-up week was a bit more sensitive.

Trubrit's picture
Trubrit
Posts: 4717
Joined: Jan 2013

Yes, plural. I have SIX. 

I'm old fashoned, and love my hot water bottles. 

Antoher thing that helped me through chemo, an electric lap blanket. I did spend an awful lot of time on the couch, by the end of treamtnet, and I would have a hot water bottle on my feet, electric lap blanket over my body and one of those lovely plush blankets over the top of that, to trap the heat in. 

I was so cold during treatment, especially during radiation - while other parts of me were burning. 

Welcome to the forum.   Be sure to post on the forum home page (https://csn.cancer.org/forum/128) and tell us all about yourself and your diagnosis. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 812
Joined: Apr 2017

Has your weight dropped a lot?  Mine did.  And that may be what is causing the cold sensitivity. If so, you could focus on putting on a few pounds.   The capecitabine (xeloda) alone should not cause too much cold sensitivity.  There are many other side effects, however.  But take it one step at a time.  What was your staging after the surgery?  That has impact on what strategies to consider.  Also, consider hot baths.  They sure helped me to relax and sleep, especially after the surgery (when the scars were healed enough) and on chemo.  Best of luck in facing these tough matters.

p14175
Posts: 11
Joined: Oct 2018

The doc said I am Stage 2B.

I have lost about 125 pounds over the last 4-5 years to take weight off my joints and to get off the BP medication, per doctor's orders. Losing weight was a struggle, not easy, but I feel a lot better now.  I used a combination of paleo/ketogenic, intermittent fasting, and exercise (mainly to maintain muscle mass and skin health). One thing that concerned me was when I started losing at a rate of 1-2 pounds per week in May of this year.  My goal was to lose no more than 2-3 pounds per month. I immediately added more carbs to my diet to maintain my weight or increase it a bit.  So far, even through surgery, etc. I have been able to maintain it +/- 2 pounds.  Since I lost all that weight I have become more sensitive to cold, but after the surgery, it has become more obvious.   

What I have done so far to stay warm is layering clothing and bedding. I find that wearing flannel PJ bottoms under sweat pants really helps. I made some personal flannel 'blankets' last year that are lightweight, warm, and lend themselves to layering so I can stay warm and my DH doesn't overheat. FWIW, polyester fleece works just as well as flannel, but is 'stickier'.  I like the flannel because I can get 100% cotton and is more comfortable in the summer. An online fabric company like Fabric.com has a great selection of flannels and fleeces, but the Walmart fabric department is pretty good too and their prices are better. 

 

beaumontdave's picture
beaumontdave
Posts: 936
Joined: Aug 2013

Well what made the effects be on the milder side for me isn't something I'd reccomend others get, a neurologial disorder called CMT desease leaves me with half the feeling in my hands and feet that others have. I did feel hot, cold, and fatigue, room temp. water was tolerable, cold water equated shock to my hands, I kept testing it because I couldn't believe the feeling. Anyway the effects faded in a year and a half, and if something stayed with me, I can't tell the difference. I hope you find what works for you, and the side effects fade away with time..........................................Dave

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