Neuropathy /chemo/ostomy/stoma and winter;s coldness:

coloCan

Its starting to get cold in New York and this morning, when I went out to get a Sunday News, the tingling in my toes and feet bottoms became worse; it was only in the low thirties. I had no gloves on so I know it wasn;t THAT cold-it will get much colder. Does the cold intensify neuropathy? Should I be wearing extra socks etc? Still undergoing FOLFOX, which I also never did in winter time. Will that affect anything?..Finally:will coldness impact ostomy or Stoma?...Any advice appreciated....Steve

Patteee

yes you should be wearing
yes you should be wearing extra socks and gloves! yes, the outside cold weather, even in the 30s hits the neuropathy in fingers and toes. I wore either my simple stretch gloves or leather ones, then WOOL mittens over them- one pair of hunters wool socks (got them at a Farm and Fleet store).

My stoma was never bothered by the cold- probably cause my mid section was generally covered very well.

maglets

Patteee said:

yes you should be wearing
yes you should be wearing extra socks and gloves! yes, the outside cold weather, even in the 30s hits the neuropathy in fingers and toes. I wore either my simple stretch gloves or leather ones, then WOOL mittens over them- one pair of hunters wool socks (got them at a Farm and Fleet store).

My stoma was never bothered by the cold- probably cause my mid section was generally covered very well.

yes it will get worse
yes Steve the cold will make some symptoms of the folfox worse. Get some really good mitts and socks, hat too and if there is a cold wind wear a scarf up around your mouth to help not breathing all the cold air. I ended up with a ski balaclava thing that I could pull up on really cold days.

some of us had freezie eyes last year too and freezie feeling face.

sorry Steve...started to type this .....DH just came in from church bearing ginger cookies and Tim Horton's coffee. I don't know if you have this chain in New York...I have seen them in upper NY state. For Canadians a Timmies is the ultimate warmer upper :):) a ritual almost....more later

mags

just4Brooks

Keep warm!!
Hi Steve, Yes it will get worse... The cold sucks so keep WARM!!!

coloCan

maglets said:

yes it will get worse
yes Steve the cold will make some symptoms of the folfox worse. Get some really good mitts and socks, hat too and if there is a cold wind wear a scarf up around your mouth to help not breathing all the cold air. I ended up with a ski balaclava thing that I could pull up on really cold days.

some of us had freezie eyes last year too and freezie feeling face.

sorry Steve...started to type this .....DH just came in from church bearing ginger cookies and Tim Horton's coffee. I don't know if you have this chain in New York...I have seen them in upper NY state. For Canadians a Timmies is the ultimate warmer upper :):) a ritual almost....more later

mags

Just recently heard of Tim Horton but never had any
nor do I know where one is around here; lots of Dunkin Donuts.Thanks all for answering. As a rule I wear a wool cap and use hoods from sweatshirt/winter coat. Don't wear gloves much but now will; will doublesock feet too. Usually wear longjohns. Will consider scarf to cover mouth as COPD already makes it difficult to breath in very cold weather.Wera glasses so can't cover up eyes and have to watch out for steaming up glasses which happened once when I used a medical face mask.Have chemo thru beginning of March and tho I'll take car services there I might want to get out of apartment so its good to know what to expect of cold weather as only experience has been with summeer/fall so far......Steve

coloCan

just4Brooks said:

Keep warm!!
Hi Steve, Yes it will get worse... The cold sucks so keep WARM!!!

Hey Brooks,I see you really got into Hard Rocks
Ha,ha,ha......Steve....(they look good tho)

KATE58

coloCan said:

Hey Brooks,I see you really got into Hard Rocks
Ha,ha,ha......Steve....(they look good tho)

When I was on folfox I wore
When I was on folfox I wore thin gloves in the house, and covered them with surgical gloves when i took anything out of the fridge,or had to touch anything cold
when I went out I left nothing exposed except for my eyes.
I could not eat or drink or touch any thing cold without pain.
If I had pains in my fingers ,running warm water on them helped.
this went on until a couple months after I stopped the oxylaplatin.
I also had cramping in my hands and feet.
If it becomes intolerable ,your might ask your doctor about cutting the dose down.
Hang in there,you'll get through.
GOD BLESS
Kate

maglets

KATE58 said:

When I was on folfox I wore
When I was on folfox I wore thin gloves in the house, and covered them with surgical gloves when i took anything out of the fridge,or had to touch anything cold
when I went out I left nothing exposed except for my eyes.
I could not eat or drink or touch any thing cold without pain.
If I had pains in my fingers ,running warm water on them helped.
this went on until a couple months after I stopped the oxylaplatin.
I also had cramping in my hands and feet.
If it becomes intolerable ,your might ask your doctor about cutting the dose down.
Hang in there,you'll get through.
GOD BLESS
Kate

hot water
I never tried that trick with hot water Kate but that's a good idea. I actually had a thermos of warm water beside the bed because the water in a glass would be too cold to drink.
I tried to get my hubby to do grocery shopping so i wouldn't have to face the frozen aisle.
Oh and I tried to keep walking for some exercise so I walked inside around the top floor of an arena that was heated.
I had my dose reduced ....I think it was on the 3rd round by round 6 I had serious doubts about that sweet little oxy drug......she's a kicker Steve...

hang in
hugs
mags

dianetavegia

For many months too
Steve, I'm almost four months out from completing 12 txs of FOLFOX and my hands / feet are starting to get a little better, however, it was 25° when we left for Sunday School and this afternoon I'm having problems making 18 'formal' bows for our largest Christmas tree.

I'm surprised your onc didn't give you a booklet on what to exect and watch for. Hmmm


Diane

coloCan

dianetavegia said:

For many months too
Steve, I'm almost four months out from completing 12 txs of FOLFOX and my hands / feet are starting to get a little better, however, it was 25° when we left for Sunday School and this afternoon I'm having problems making 18 'formal' bows for our largest Christmas tree.

I'm surprised your onc didn't give you a booklet on what to exect and watch for. Hmmm


Diane

Diane:My oncologist and radiologist had told me what to expect,
more or less and I usually took notes and had girlfriend with me(who seemed to remember more)and I researched stuff on the internet. Surgeon told me a little as to what to expect after colostomy. However, I find I get more "empirical "(haven't used that term in a while),practical info based on experience as well as knowledge over here which is why I'm asking how cold weather affects everything.
Maqgs: As for oxy, I did it during my first round of chemo prior to surgery, with radiation and Xeloda and won't compare that with FOLFOX till I'm finished with FOLFOX.(2 of 9 so far).....Steve

maglets

coloCan said:

Diane:My oncologist and radiologist had told me what to expect,
more or less and I usually took notes and had girlfriend with me(who seemed to remember more)and I researched stuff on the internet. Surgeon told me a little as to what to expect after colostomy. However, I find I get more "empirical "(haven't used that term in a while),practical info based on experience as well as knowledge over here which is why I'm asking how cold weather affects everything.
Maqgs: As for oxy, I did it during my first round of chemo prior to surgery, with radiation and Xeloda and won't compare that with FOLFOX till I'm finished with FOLFOX.(2 of 9 so far).....Steve

chemo
I did not do folfox at all Steve. My first chemo was 5FUplus leucovorin. the next one was just xeloda. My last kick at the can was xeloda plus the oxalyplatin.

I found the oxy the worst.

mags

KATE58

maglets said:

chemo
I did not do folfox at all Steve. My first chemo was 5FUplus leucovorin. the next one was just xeloda. My last kick at the can was xeloda plus the oxalyplatin.

I found the oxy the worst.

mags

Folfox is a coctail composed
Folfox is a coctail composed of leucavourin, 5FU ,and oxylaplatin.
Xeloda is oral 5FU.
folfiri is irinotecan,5FU ,and leucavourin

my first was folfox,then they added avastin,then avastin alone for 6 months
then xeloda for a year,then added oxy for three months,
erbitux alone for 4 months and now irinotecan.
It's like using the same ingredients, but continually changing the recipe.
But so far the worse was oxylaplatin,alone or as folfox ,thats what causes the periferal neuropathy.
Hang in there
GOD BLESS
Kate

maglets

KATE58 said:

Folfox is a coctail composed
Folfox is a coctail composed of leucavourin, 5FU ,and oxylaplatin.
Xeloda is oral 5FU.
folfiri is irinotecan,5FU ,and leucavourin

my first was folfox,then they added avastin,then avastin alone for 6 months
then xeloda for a year,then added oxy for three months,
erbitux alone for 4 months and now irinotecan.
It's like using the same ingredients, but continually changing the recipe.
But so far the worse was oxylaplatin,alone or as folfox ,thats what causes the periferal neuropathy.
Hang in there
GOD BLESS
Kate

wringer
wow Kate you have been through the wringer...lots of cocktail

You cannot believe how good it is to hear that other people found the oxy hard...me too and I cursed myself when doing it for being such a wimp but I did find it hard

thanks kate and all the very best to you Steve

mags

coloCan

maglets said:

wringer
wow Kate you have been through the wringer...lots of cocktail

You cannot believe how good it is to hear that other people found the oxy hard...me too and I cursed myself when doing it for being such a wimp but I did find it hard

thanks kate and all the very best to you Steve

mags

Yeah, looks like Kate's had some of everything
Its hard for me to tell which is worse when taking a mixture. First round, oxy,tho once a week, was much worse than Xeloda, which was twice a day, five days a week because I'd really feel it after infusion, especially by third dose=fifth almost killed me. This round is FOLFOX with pump every two weeks but no radiation or tumor inside me.How;s the weather by you? Only got a tease of snow Saturday, nothing to really speak of as nothing stuck and quickly returned to rain. Hoping for a mild winter. See you guys five hours or so from now. I'm gonna try and sleep. HA!!!!>Steve

maglets

coloCan said:

Yeah, looks like Kate's had some of everything
Its hard for me to tell which is worse when taking a mixture. First round, oxy,tho once a week, was much worse than Xeloda, which was twice a day, five days a week because I'd really feel it after infusion, especially by third dose=fifth almost killed me. This round is FOLFOX with pump every two weeks but no radiation or tumor inside me.How;s the weather by you? Only got a tease of snow Saturday, nothing to really speak of as nothing stuck and quickly returned to rain. Hoping for a mild winter. See you guys five hours or so from now. I'm gonna try and sleep. HA!!!!>Steve

sleep and warm
you staying warm there buddy. I would like to type question mark but when I do this is what i getÉÉÉÉÉÉ
yikes my computer has decided to speak French and I cannot ask any questions.

We have a ton of snow already Steve and I had hubby look up the record for our town....it is 12 feet of snow for us!! so I really can send you some.

how bout sleeping Steve...you doing any of thatÉÉÉ question mark lol

hugs
mags

coloCan

maglets said:

sleep and warm
you staying warm there buddy. I would like to type question mark but when I do this is what i getÉÉÉÉÉÉ
yikes my computer has decided to speak French and I cannot ask any questions.

We have a ton of snow already Steve and I had hubby look up the record for our town....it is 12 feet of snow for us!! so I really can send you some.

how bout sleeping Steve...you doing any of thatÉÉÉ question mark lol

hugs
mags

sleep intermittantly,hour or two at a clip,get up,do whatever,
check status of ostomy bag and try for another two or so more hours. Casn;t remember last time I had a real nite of sleep,definitely before this all started, which was when pain/blood began in Jan 2008. Didn;t do colonoscopy til May 2009. Prior to that occassionally used Xanax to sleep; now even with Ativan have trouble sleeping and cannot nsap during day. If real tired I just lie in bed....Still no snow in Brooklyn yet. Went out for little walk this AM.Wed return to cancer center for third dose of chemo, hope its not too nasty out....Hope you and husband doing fine....Steve

coloCan

maglets said:

sleep and warm
you staying warm there buddy. I would like to type question mark but when I do this is what i getÉÉÉÉÉÉ
yikes my computer has decided to speak French and I cannot ask any questions.

We have a ton of snow already Steve and I had hubby look up the record for our town....it is 12 feet of snow for us!! so I really can send you some.

how bout sleeping Steve...you doing any of thatÉÉÉ question mark lol

hugs
mags

sleep intermittantly,hour or two at a clip,get up,do whatever,
check status of ostomy bag and try for another two or so more hours. Casn;t remember last time I had a real nite of sleep,definitely before this all started, which was when pain/blood began in Jan 2008. Didn;t do colonoscopy til May 2009. Prior to that occassionally used Xanax to sleep; now even with Ativan have trouble sleeping and cannot nsap during day. If real tired I just lie in bed....Still no snow in Brooklyn yet. Went out for little walk this AM.Wed return to cancer center for third dose of chemo, hope its not too nasty out....Hope you and husband doing fine....Steve

christinecarl

I remember my eyes freezing shut
My eyes started to water from the cold and than started to freeze shut. A real pain in the **** when you need to drive home from getting your pump disconnected and its Jan in MN. I wore a lot of wool sweaters, coats, socks and thermal underwear.

coloCan

christinecarl said:

I remember my eyes freezing shut
My eyes started to water from the cold and than started to freeze shut. A real pain in the **** when you need to drive home from getting your pump disconnected and its Jan in MN. I wore a lot of wool sweaters, coats, socks and thermal underwear.

Had my third dose of FOLFOX and eyes froze like you said
Its in the twenties with wind here in Brooklyn and when I walked five minutes outside to get a newspaper after returning of pump, when I got home, felt like my eyes kept wanting to close on me. Had to fight to keep eyes open. Never happened before. Bundled up rest of me but not face. Don't know how to prevent this as I need to wear my glasses...scary....