Oxaliplatin Tingling and Sensitivity to Cold

CherylHutch
CherylHutch Member Posts: 1,375 Member
edited March 2014 in Colorectal Cancer #1
Hi Everyone,

I am new to this forum but have read through some of your topics and am pleased to see what a wonderfully supportive group this is!

My name is Cheryl and I live in Vancouver, B.C. (west coast of Canada). I was diagnosed with Colon Cancer December 19th, was admitted then and there to the hospital, set up on IV antibiotics (for an abscess and peritonitis) before the intestinal resection on Jan 4th.

I have started my chemo two weeks ago and the first session I did really well. The only side affects I had was a nasty headache for the first evening and second day, and then some mild nausea on Day 4 and 5. I also got the side affect from the Oxaliplatin where I couldn't drink cold beverages from the fridge because my throat would close up. The second week (rest week) I had no side affects.

Yesterday, was Day 1 of Session 2. I was expecting the same side affects as the first session... and sure enough, I got the headache last night. But this time I also got the tingling in the fingers and pain if I touched anything cold... even taking anything out of the fridge.

But it was this morning that surprised me. I took the dog out for her morning constitution and, although it was chilly (42F), there was absolutely no wind, not even a slight breeze. But we got a block from home and my eyelids started tingling then closing, my face started tingling and then it was getting harder to breathe (only shallow breaths). Luckily, a neighbour came by with her dog so she stayed with me and walked me home. By this time my voice had disappeared to a whisper, my fingers were very painful (even though I had put wool gloves on before I left home) and my throat was limited and now my tongue and gums were tingling.

Has anyone else had this and did it surprise you? I had been told of these possible reactions, but didn't think they would be that severe.

Comments

  • jams67
    jams67 Member Posts: 925 Member
    I've never had a reaction like that. I did drink a milkshake after once, and it froze my tongue and lips enough that my speech was slurred making it very hard to talk.
    I think you need to discuss this with your onc. Let us know what you find out.
    Jo Ann
  • vinny3
    vinny3 Member Posts: 928 Member
    I definitely had the same thing. If it was a cool day and I went out for a walk, especially close to the time of my last chemo, my face would feel like it was freezing. It would affect my breathing too if it was quite cold (I live in Minnesota). Had to definitely cover up or not take the walk then. You should use gloves to get things out of the refrigerator or to handle anything cold. I found that wearing golf gloves for that worked well as you still are able to maintain your sense of touch. For the first 3 cycles the side effects would seem to go away after 5 days or so but after that they would stay longer and longer. I stopped chemo after 9 cycles due to the neuropathy although there are many brave souls here who did the whole 12 cycles. I did find, and others here have mentioned it as well, that the peripheral neuropathy got worse after stopping my treatments. However, while bothersome, it has been tolerable and perhaps serves as reminder for me to be thankful for what I have.

    ****
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Hi Cheryl -

    What you describe does not really surprise me.

    I was "lucky" enough to have my chemo only from July through November and here in DC that means, mostly hot / warm weather. After my first treatment I only had the cold sensitivity when touching something or drinking something. And it only really lasted about 5 days. But after the second treatment (and remember this was August in DC which means 90+ degrees) I went to little shopping center to buy something and I walked on the sidewalk past a store which had AC on but also had the door open. A blast of cool air hit me and my whole face twisted up and my throat did that "constricting thing". It didn't last long, but my point is that this happened on a 90 degree day and there was certainly nothing blowing the cold air on me. So, bundle up when you go out, at least for the first several days. In a colder climate I am sure the effects are even more extreme (since my reaction was just to a single blast of cold air).

    By the way - I came to call the headache/body aching thing(which started at the end of my first day) the "chemo flu" - it was gone by day 3 - but it happened like clockwork with every treatment (but never got worse, just the same thing every time).

    People do react differently to oxaliplatin - most experience the kind of tingling peripheral neuropathy that you describe. The tips of my fingers tingled if I used them (as in typing) for a day or two (but I still kept typing). I once chopped celery with gloves on! Only had one episode of foot pain - not pleasant, but only lasted two days and never recurred. In my case, however, which is unusual according to my oncologist and also according to what I have observed on this board, I had very acute neuropathy in the arm that received the infusion (no port) for several days and took 2+ weeks to resolve completely. But, after I stopped chemo I had absolutely NO residual neuropathy - except for an incredible coldness in my feet which resolved by March(2006) when the weather started to warm up and didn't recur again this winter.

    Take care and come back with questions,
    Betsy
  • goldfinch
    goldfinch Member Posts: 735
    I definitely experience this. I ended up stopping the walks with my dog in the morning. Fortunately, I am able to open the door and let her out for a while by herself. My eyes tear up when I go out in the cold, and my hands tingle. I didn't have the shortness of breath you describe, but I guess I'm not surprised that this could happen. I would mention it to the oncologist.
    Mary
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    goldfinch said:

    I definitely experience this. I ended up stopping the walks with my dog in the morning. Fortunately, I am able to open the door and let her out for a while by herself. My eyes tear up when I go out in the cold, and my hands tingle. I didn't have the shortness of breath you describe, but I guess I'm not surprised that this could happen. I would mention it to the oncologist.
    Mary

    Thanks, everyone!! Although I'm not happy that you all have experienced this, is does make me feel better that I'm not going crazy (grin). Ok, maybe I am, but I'm sure that's for another forum ;)

    I bundled up and took the dog to the groomer's at 11am, but decided to play it safe and drove her, even though it's only 9 blocks from my place. I parked the car, dropped her off, then walked the block to my GPs and popped in to pay him a visit. I told him about this morning's symptoms and he didn't think I had to worry. He told me to use common sense... if I go outside and end up finding it's too cold, then turn around and come back inside and get someone else to take the dog out (I live in an apartment in the city so can't let her go out on her own). But I have a lot of neighbours in the building who are more than willing to help out, including doggy-walks, so I will have to keep this in mind.

    Yes!! My eyes tear up too when I'm outside... and there doesn't have to be a breeze or a wind for that either!! My right eye just starts tearing all on it's own... and doesn't stop. The left eye sometimes tears in sympathy, but it's the right eye that is weeping uncontrollably, the little wuss ;)

    Anywho... I will certainly mention it to my oncologist the next time I see her since when I saw her this past Friday, I told her that I hadn't felt any of the tingly side affects. Now I have!

    Thanks for all your replies...they really do help!

    Cheryl
    http://ourcheryl.blogspot.com
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    Hi Cheryl. welcome but sorry you have to be here. My husband is on oxal also . He has the tingling also. I belive most if not all do. He does wear gloves for fridge, stays away from cold drinks/food for about 5 days after treatment and did wear a scarf over mouth outside on cold days or if windy. Fortunately his symptoms haven't been that severe but he's only completed two treatments. Be sure you tell your onc though, they may have to reduce the dosage some. Good luck and God Bless.
  • changing
    changing Member Posts: 134
    Yes, I too had the tingling with the oxi but PLEASE be sure to tell your nurse how much your eye lids, face and gums became involved, to say nothing of the throat...BEFORE you take your next chemo tx. They usually ask before giving you each tx but ALWAYS BE YOUR OWN ADVOCATE :) The severity of the side effects hits us all a bit differently....that's why it's good to give a thorough report on "your" reaction. Let us know how it goes!We'll be here!
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    Hi Cheryl:
    Ditto to my husbands reaction...best of luck to you and from a fellow Candian.let me know if I can help you wade through the "cancer waters" in Canada
    Bev
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member

    Hi Cheryl:
    Ditto to my husbands reaction...best of luck to you and from a fellow Candian.let me know if I can help you wade through the "cancer waters" in Canada
    Bev

    Ohhhh... thanks you three! I can see where this forum is going to be, not only a wealth of information, but a wonderful group of online supporters! I am lucky in that I have a wonderful support group of friends offline, but when one has a question, it's always great to have a group of folk like you who are going through the same questions/answers! Many thanks in advance!

    Yes, I will definitely be telling my onc about the latest reactions to Oxy. They were most concerned that I report anything I feel and my first treatment went very smoothly with only the reaction to cold drinks. Yesterday was the first I had felt with the face/eyelids/tongue/gums/nasal passages... so I will definitely followup on this.

    Any minute now, the home care nurse is coming over to remove my Chemo Pump that I wear for 46 hours with the 5FU. This is only my second treatment, too, but what a convenience to have a nurse come here to the apartment, rather than getting to the Cancer Foundation, parking, waiting for one's appt., then the 2 mins it takes to remove it. Much more convenient this way!

    I shall be back with reports... and am so glad I found you all!
  • Ruth777
    Ruth777 Member Posts: 1
    jams67 said:

    I've never had a reaction like that. I did drink a milkshake after once, and it froze my tongue and lips enough that my speech was slurred making it very hard to talk.
    I think you need to discuss this with your onc. Let us know what you find out.
    Jo Ann

    Senitvity to cold

    Hello Everyone, I'm new to this forum and it looks like a lot of good info shared here. My daughter found it for me after my bad reaction yesterday after my first Oxaliplatin infusion. I had oral 5FU in my first round of chemo during radiation but no infusions that time. I was diagnosed with stage 2B colorectal cancer in February and did the oral chemo and radiation for 6 weeks. Side effects were minimal, mostly senitivity in my fingers to hot so had to wear gloves to do dishes.  Then I had surgery in June which included the ileostomy from hell! None of the bags would stick to my skin except for the ones that

    I was allergic to the adhesive!  After 2 months my surgen finally reversed the ileostomy. 

    I started my next round of chemo yesterday, oral Zeloda and Oxaliplatin infusion.  Afterwards my daughter an I went to the store and on the way out we decided to get an ice cream!  I knew they said there "MAY" be a sensitivity to cold, but I thought it would take a few days like it did when i started the Zeloda last time. I took a bite of chocolate  immediately my tongue started tinging and it felt like the ice cream was fizzy! It also tasted extremely salty! My daughter tasted it and said it was a little salty, so I got a different flavor but the fizzyness and tingle were still there. I took a couple more bites but just couldn't handle it and told her i was going to take it home for my hubby.  As we sat in the truck so she could eat hers before driving, I ate a piece of chocolate to see if it would taste salty also, it didn't but as I tried to lick the back of my teeth I couldn't controll m tongue. She asked if it was swollen cuz I sounded funny. I looked in thd mirror and said yesth! And my lips were going numb. She called my onchologist office and the nurse what was goinv on and she told me to immediatly go to the ER but on our way there they called back and said to come back to the office so I wouldn't have to wait in ER.

    They gave me IV Benadryl and in a few minutes my tongue and lips went back to normal. I think they need to be a little more adamant about warning patients of this cold reaction and tell them what to expect. I was only told I might have a "sensitivity" to cold! Never that I might have a severe reaction to it Like my tongue swelling!  After my reactions, they then told me that I shouldn't stand in front of the freezer to long, and to wear gloves to take things out of the freezer. Also ifni go outside in the cold I need to wear a scarf over my face! 

    This morning I have a severe headache and last night and this moring when I first bite down to eat anything my jaws hurt for the first couple of times i chew! 

    My daughter also found tjis info that I am going to ask my onchologist about. 

    "Too bad no one told you about the treatment (suggested by Oxaliplatin or Eloxatin's manufacturer, Sanofi-Aventis) to reduce side effects such as neuropathy and cold sensitivity. The treatment consists of 1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after your Oxaliplatin infusion. At first, it didnt' seem to make much of a differance for me. After the second treatment, I noticed significant improvement. I'm told by my various nurses that improvement is cumulative. I believe in being informed. I learned of this particular treatment from a guest physician at an "I Can Cope" class put on by the American Cancer Society. By the way, this is the class from which I learned the most. I was the one who took the information to my physician and requested this treatment to reduce side effects. Sanofi-Aventis said that they sent a flyer recently to all prescribing oncologists about this treatment, but I had to ask for it. If Oxaliplatin is really not for you, !

     look into FOLFIRI as a treatment option, that is if you are using 5FU currently. "

    Thank you al for your imput !

    Blessings, Ruth

     

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    Ruth777 said:

    Senitvity to cold

    Hello Everyone, I'm new to this forum and it looks like a lot of good info shared here. My daughter found it for me after my bad reaction yesterday after my first Oxaliplatin infusion. I had oral 5FU in my first round of chemo during radiation but no infusions that time. I was diagnosed with stage 2B colorectal cancer in February and did the oral chemo and radiation for 6 weeks. Side effects were minimal, mostly senitivity in my fingers to hot so had to wear gloves to do dishes.  Then I had surgery in June which included the ileostomy from hell! None of the bags would stick to my skin except for the ones that

    I was allergic to the adhesive!  After 2 months my surgen finally reversed the ileostomy. 

    I started my next round of chemo yesterday, oral Zeloda and Oxaliplatin infusion.  Afterwards my daughter an I went to the store and on the way out we decided to get an ice cream!  I knew they said there "MAY" be a sensitivity to cold, but I thought it would take a few days like it did when i started the Zeloda last time. I took a bite of chocolate  immediately my tongue started tinging and it felt like the ice cream was fizzy! It also tasted extremely salty! My daughter tasted it and said it was a little salty, so I got a different flavor but the fizzyness and tingle were still there. I took a couple more bites but just couldn't handle it and told her i was going to take it home for my hubby.  As we sat in the truck so she could eat hers before driving, I ate a piece of chocolate to see if it would taste salty also, it didn't but as I tried to lick the back of my teeth I couldn't controll m tongue. She asked if it was swollen cuz I sounded funny. I looked in thd mirror and said yesth! And my lips were going numb. She called my onchologist office and the nurse what was goinv on and she told me to immediatly go to the ER but on our way there they called back and said to come back to the office so I wouldn't have to wait in ER.

    They gave me IV Benadryl and in a few minutes my tongue and lips went back to normal. I think they need to be a little more adamant about warning patients of this cold reaction and tell them what to expect. I was only told I might have a "sensitivity" to cold! Never that I might have a severe reaction to it Like my tongue swelling!  After my reactions, they then told me that I shouldn't stand in front of the freezer to long, and to wear gloves to take things out of the freezer. Also ifni go outside in the cold I need to wear a scarf over my face! 

    This morning I have a severe headache and last night and this moring when I first bite down to eat anything my jaws hurt for the first couple of times i chew! 

    My daughter also found tjis info that I am going to ask my onchologist about. 

    "Too bad no one told you about the treatment (suggested by Oxaliplatin or Eloxatin's manufacturer, Sanofi-Aventis) to reduce side effects such as neuropathy and cold sensitivity. The treatment consists of 1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after your Oxaliplatin infusion. At first, it didnt' seem to make much of a differance for me. After the second treatment, I noticed significant improvement. I'm told by my various nurses that improvement is cumulative. I believe in being informed. I learned of this particular treatment from a guest physician at an "I Can Cope" class put on by the American Cancer Society. By the way, this is the class from which I learned the most. I was the one who took the information to my physician and requested this treatment to reduce side effects. Sanofi-Aventis said that they sent a flyer recently to all prescribing oncologists about this treatment, but I had to ask for it. If Oxaliplatin is really not for you, !

     look into FOLFIRI as a treatment option, that is if you are using 5FU currently. "

    Thank you al for your imput !

    Blessings, Ruth

     

    Welcome to the forum, Ruth.

    May I suggest that you start a brand new thread, just copy and paste what you have written here. 

    This is a VERY old thread, and sadly some of our members have passed on. 

    I know that those of us who post to the fourm would love to welcome you here, and that would best be done in your own thread. 

    I am sorry that you have joined the fight, but now that you have, joining us here will prove to be a good move, 

    I look forward to seeing this post in a new thread. 

    Sue - Trubrit