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Cold Sensitivity

abita's picture
abita
Posts: 1019
Joined: Dec 2017

How do you know/test that the cold sensitivity has passed for the cycle? 

Nazareth
Posts: 88
Joined: Nov 2017

my onc told me the way to test is to put hands in freezer for a little bit to see if the needle-like pain hits- if not, and if you can hold cold cans of soda or whatever- and can drink without hte throat feeling like it's on fire- then you shoudl be good to go

abita's picture
abita
Posts: 1019
Joined: Dec 2017

I was hoping for a bit less pain in knowing, but I guess that is too much to ask.

Annabelle41415's picture
Annabelle41415
Posts: 6706
Joined: Feb 2009

Obviously this doctor never experienced the pain associated with the cold sensitivity.  Doctor should be put on this drug so they can answer your question better.  Try a water glass of water, if you can hold it try then adding little ice at a time - not much though.  You can gradually determine it from there. 

Kim

abita's picture
abita
Posts: 1019
Joined: Dec 2017

Thanks, that is a great solution.

Trubrit's picture
Trubrit
Posts: 5453
Joined: Jan 2013

I think I would tell my Onc to go put his head in the freezer. 

I'm sure their is a better way. Like, taking a tiny sip of cold water, or putting your hand on a cold can or something metal. 

Tru

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

Around here, you just walk outside early in the morning or late at night without gloves.

Nazareth
Posts: 88
Joined: Nov 2017

that's what she recommended abotu the can- she was basically statign that while on the oxiplatin, to avoid goign in freezer for htigns with bare hands, then after I was off for awhiel to test by slowly putting htem in freezer- She wasn't suggestign taking ahold of soemthign frozen, morel ike slowly allowing hte cold to hit the hand, not much different htan goign outside in the cold really-  if htere was no pain, or little pain, then thigns shoudl be better- she wasn't suggesting i keep my hands in freezer if the pain occured lol-

Trubrit's picture
Trubrit
Posts: 5453
Joined: Jan 2013

She now has permission to take her head out of the freezer. 

I dropped so many cartons of yogurt. Such a messy food to celan up. 

Tru

Nazareth
Posts: 88
Joined: Nov 2017

i haven't gotten to hte point of dropping things yet from cold/pain, but drivign in morning is a bit painful- gotta use my gloves till the steerign wheel warms up some- the pain i woudl describe as 100 tiny bees stinging my fingers- mostly the finger tips- or small needles beign stuck into them- not extremely painful but enough to get my attention in good shape-

I imagine it's goign to get worse though as hte treatments continue- Haven't had the throat pain/spasms yet from cold drinks- but a wierd thing that happened was when i ate stuff my back teeth/jaw hurt and got hte same meedle liek senstation- but after a few bites it went away-

abita's picture
abita
Posts: 1019
Joined: Dec 2017

I had the jaw thing happen twice. Was not expecting that. 

caregiver3
Posts: 49
Joined: Oct 2017

My dh just had his first round of FOLFOX, so I am no expert at all!  I've been given lots of advice on this board!  But, My dh couldn't even handle room temp drinks for 6 days after!  On day 7 after, he just took a small sip of room temp water and did ok.  A little later that day he took a small sip of cold apple juice and it didn't bother him, so that's how he knew.  But like I said this is his first round and it was rough on him.  This may not work next round, but thought I would share. 

abita's picture
abita
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Joined: Dec 2017

Room temperature bothers me too. I take a sip, hold it in my mouth a second, then swallow. Warms it up enough I guess

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

On a follow up visit I asked my Oncologist for a cup of water and he gave me a cup of chilled water.

Yikes! Then he said that I must have cold sensitivity...

I don't think he was thinking when he gave it to me.

He is a great Oncologist and answers all of my questions and inquiries usually the same day.

Annabelle41415's picture
Annabelle41415
Posts: 6706
Joined: Feb 2009

It's hard to determine but you should try it little steps at a time.  I'd add a cube or two of ice and go from there.  Try lightly to touch the glass, if it hurts after one ice cube wait another day and try again.  Don't try to force it.  Eventually you will find out what tests will work for you.  Hard time of year with the cold going through this. 

Kim

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

The water dispensers at the office dispense hot or cold water. If you wa something in between, you have to mix them.

abita's picture
abita
Posts: 1019
Joined: Dec 2017

WOW! I had my first outing where I walked to the subway, and it happens to be very cold out. Clearly, my gloves are only okay for short walks. 10 minute walk, the pain, oh my goodness. I thought it was bad inside when I accidentally touched something a bit cold, this was insane pain. Yikes!

Nazareth
Posts: 88
Joined: Nov 2017

just had my second round of oxaliplatin and 5 FU today (beign hooked up to pump now for 2 days) and wow- the pain in hands was 10 times worse than my first round- Also cramping up all over- yuck- anyways- the cold pain quite3 a phenomenon- my first cold pain lasted oly aqbout 5 days or so, then htigns were fine- we'll see how long it lasts thuis time- Also did they tell you to wear a scarf? I was told that today- breath into the scarf to help prvent the throat pain- but so far I haven't had the thoat pain

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

We're expecting temperatures in the low single digits this week and I'm starting Oxaliplatin next week so some of these stories are scary to me. I had been expecting part three of treatment to be easy compared to parts 1 and 2. But I don't know whether that's true or not anymore. For those on Adjuvant Chemo now, how would you rank the three phases of treatment?

Trubrit's picture
Trubrit
Posts: 5453
Joined: Jan 2013

Its chemo. It doesn't get any easier. 

I have come across a few people over the years, who have sailed through the Oxaliplatin, but not too many. 

Just be prepared. 

Saying that, I've not done Adjuvant Chemo, so maybe I'm wrong. I wouldn't mind being wrong. 

Tru

abita's picture
abita
Posts: 1019
Joined: Dec 2017

he did tell me to wear a scarf. It was definitely worse for the second round for me. 

airborne72's picture
airborne72
Posts: 281
Joined: Sep 2012

I am on the last day of my second cycle of adjuvant chemo (Oxy and 5Fu) and my reaction has been worse, just not tenfold worse.  With this limited amount of adjuvant experience I can easily say that the adjuvant is much more impacting than was the neoadjuvant treatment.

My reaction to cold definitely intensified this second cycle and has lasted the entire period of time since infusion.  But, it did gradually lessen as the days passed.  I also experienced the muscle cramping in my hands and forearms.  This was initiated when I was sweeping or using the vacuum/rug shampooer.

My daily "how do I feel" log for my adjuvant chemo has twice indicated that my best days are the last three of each two-week cyle.  What I have done is prioritize my tasks and reserved the physically active tasks for that time.  Yesterday I was a whirlwind for about 4 hours proudly displaying the "ant" mentality by working as hard as I could while I could, knowing that beginning tomorrow I will once again slide back into the depths of fatigue and nausea for a week or so when I begin my third cycle.

Jim 

Nazareth
Posts: 88
Joined: Nov 2017

[[I can easily say that the adjuvant is much more impacting than was the neoadjuvant treatment.]]

 

Same with me- I'm on treatment 2 folfox and 5FU- and the cold sensitivity really increased on this one- I woudl say yeah- probably 7 fold- Feet- hands, nose- eyes but not throat so far-

 

My doc gave me Emend for the nausea ($600 for 3 pills taken on all three days) and it works tremendously- no nausea whatsoever- and they gave me Dexamethasone (sterooid i beleive) for combating several things like mouth inflamations/sores, energy level drain, and soem other htigns UI can't remember now- and i have to say it's helping with the energy quite a bit *(I take 2 pills per day for the two days I'm on the 5 FU)

 

My nurse that comes and hooks me up went through all this and she said it is just going to gradualyl get worse- and she hoped I could go through with it all- she ended up with permanent peripheral nueropathy in foot- I'm really really hoping to avoid that- this cold sensitivity is fairly brutal already at threatment 2

 

A wierd thing happened to me- I always cramp up with my treatments- legs, hands, neck etc- probably due to soem dehydration- I've been tryign to bulk up on water/gatoraid etc- plus taking magnesium and potasium, and drinking carnation drinks etc- but for soem reason my calf muscles got injured at soem point and i had a real tough time walking- not sure what's goi9ng on here- Seems to me if i cramped up bad enough to injure the muscles during sleep i shoudl have woken up from the pain- but nothign liek that happened- I didn't do anythign strenuous to injure the muscles either- so no idea what happened there- Still walking gingerly on day 3 now)

 

nyway- it;s a long journey- hopefulyl we can all get through it without too much unbeartablness-

 

(Sorry for typos- between brain fog, chemo brain, and some kind of neurological issue- My spelling is terrible and htere's no spelling correcion here that i can see?)

Trubrit's picture
Trubrit
Posts: 5453
Joined: Jan 2013

Don't worry about the typos. We read it like a second language here. I doubt any of us who are going through or have gone through chemo, come out with fingers and brains that have not been impaired. 

Tru

Nazareth
Posts: 88
Joined: Nov 2017

I'm not dislexic, just my fingers are lol- the neuor issue causes me to see the word correctly, but my fingers mix up the letters on their own lol-  you'll note over time they are mostly the same words, like thouhg htis htat, havign etc- with spell correctors I spend a lot of time correcting lol- funniest part is that once upon a time i was the editor for school newspaper- I miss my brain-

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

But rather than blaming it on chemo brain I think of it as my brain thinking faster than my fingers can type Cool

I had eight adjuvant treatments with Folfox and Avastin and avoided cold sensitivity problems by not eating, drinking, or touching anything cold for the entire treatment time. I wore socks at all times and wore gloves whenever I reached in the fridge or went grocery shopping. It was summer in the Deep South so I didn't have to worry about cold weather but wore a sweater in air conditioned places.

I may have looked eccentric but that's one of the perks of being elderly, people expect you to be a little odd, Wink

Grace/lizard 44

Annabelle41415's picture
Annabelle41415
Posts: 6706
Joined: Feb 2009

I've blamed a lot on chemo brain.  And yes sometimes your brain doesn't work like it should but my fingers mean the right writing and my mouth means the right words it just doesn't always seem to come out right LOL.  We just have to deal with it.  Plus, like you said, I'm getting older and even my kids say "you told me that already."  Oh well.

Kim

Mikenh's picture
Mikenh
Posts: 779
Joined: Oct 2017

I think that people are making more mistakes in general but moreso because of auto-correct. The effects are that it makes us lazy in spelling and that it also can make usage errors. There's also typing on mobile devices or keyboards that aren't so great.

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