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OMG.. Heat intolerance after chemo!

Lainey64
Lainey64 Member Posts: 127

Ok, I don't know if my problem is isolated or anyone else is sharing this with me right now but I absolutely cannot tolerate the sun or even heat!  When I get outside and my body starts to get hot, my skin starts crawling and itching like mad.  I feel like there are a million ants crawling all over my skin.  I tried sunblock and that doesn't help as it seems it's not the sun but actually "heat" that is causing this reaction.  I finished chemo in March and this is very weird!  I see my onc on Tuesday and plan to bring it up.  We have vacation to disney world planned next month and I'm afraid I'm going to be miserable if it's too hot outside.

Is anyone else sharing this horrible SE and if so, are you doing anything to get some relief?

Help! :)

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Comments

  • lbrewer
    lbrewer Member Posts: 96

    I THOUGHT IT WAS JUST ME!  I finished mine in April and the heat is so bad it makes me nauseus.  (sp?)  You might try an antihistime for the itching.  I live in Orlando and its been awful.   

  • Lainey64
    Lainey64 Member Posts: 127

    I've been on all kinds of antihistimines lately.  To make matters so much worse, I developed a very itchy rash on my chest.  It started right near my port scar and spread around my neck.  It goes away after I take a lot of stuff but as soon as I get hot, it starts itching like heck.  I had a feeling that if was hot in Texas it was going to be just the same in Orlando.  I really don't want this lousy SE to ruin my much anticipated vacation.  Damn chemo!

  • ttrish
    ttrish Member Posts: 1

    Apparently, chemo destroyed my body's thermostat--I no longer can tolerate heat at all.  Prior to diagnosis and treatment, I had lived in very hot climates:  Tucson, AZ; Davis, CA; and in Chicago, IL, where I was diagnosed and treated.  I always was able to adjust to and tolerate heat--though not willingly, happily, or comfortably, but we always had swimming pools to help us get through the summers.  Now, I live in the SF Bay area, where I was raised, and when temps rise over about 78, I suffer---become agitated, crabby, impatient, uncomfortable, sweaty, etc., and must take several showers a day when it is hot in order to tolerate the "heat."  Family members chide me, saying "Oh it's not that hot--this is not Arizona!"  I have given up trying to get them to understand that, in a sense, I now have a "heat tolerance disability" and that this is not a choice or a preference--it is my physical reality.

     Until a friend who also has survived BC mentioned that chemo destroyed her ability to withstand hot weather, I had assumed that my body's thermostat simply had worn out as a result of too many years living in hot climates.  When she told me of her experience, it dawned on me that I never had this problem before going through chemo.  Perhaps this has something to do with the fact that chemo forced me into early menopause, and the problem relates to menopause, but other menopausal women have not commented on this phenomenon... 

     Has anyone else noticed that they cannot tolerate heat after going through chemo?.

  • NatsFan
    NatsFan Member Posts: 1,927

    Count me in - I used to love the heat - sitting in the blazing sun at a Sunday afternoon baseball game was my idea of heaven.  Now I have to scramble for the shade and the a/c - I'm over 3 years out of chemo and it's only improved marginally, so I'm thinking this is a pretty permanent state for me. 

    When I know I'm going to be in the heat I have a sprayer that I fill with water and can spray on my arms, legs, face, etc. and that helps cool me.  I also have a little hand towel I can wet down and wipe off my face.  I also never miss an opportunity to get into AC - I duck into a lot of little shops for a few minutes of relief. I also freeze a bottle of water - that way I can drink it as the ice melts and I'll have cold water, and I can also put the cold bottle up against my face and neck.  

    On the bright side, chemo cured my lifelong horrible seasonal allergies and gave me beautifully curly hair. Cool

  • apple
    apple Member Posts: 1,466

    i noticed an increased heat intolerance.  it has passed tho, ... just to let you know that there may be hope.    Dreading the cold winter tho.

  • cwild79038
    cwild79038 Member Posts: 1

    I am now six years post chemo (TAC) and herceptin for twelve months.  Am post menopausal (had ovaries removed), but the heat intollerance I feel is very frustrating and very real.  Now I don't know if its due to menopause, chemo or both, but I just sweat buckets all day long when its warm.  Keep the house at about 77 degrees in summer but still sweat with very little activity.  My hair is almost always wet, and makeup forget it, I've usually wiped it off within 10 minutes.  I can't get dry when I get out of the shower.  This condition for some reason seems to make me feel very nervous too.  But hey I'm alive, so I'll just have to live with it.  Oh and I'm 50 years old.

    Good Luck Ladies.........Love Carole

  • cancerrehabmd
    cancerrehabmd Member Posts: 1

    I'm a cancer rehabilitation physician.  I help to treat the after-effects of cancer.  Please read my blog post below on this topic of chemotherapy-induced heat intolerance.

    http://ericwisotzkymd.blogspot.com/

  • amethyst11
    amethyst11 Member Posts: 6

    I really believed this was my problem only but out of curiosity I checked this site. Was so surprised to see that others were experiencing the same issue. I was diagnosed with Breast cancer (HER2+, stage 3A) in 2011. Went thru a year of chemotherapy plus radiation. Everything seems to be going well. But I have noticed over this past year my heat intolerance has increased quite a bit. I went thru menopause at 50 with actually no side effects. I'm 65 now so I can't believe that this can be part of the whole hormonal issue. I go to both my breast surgeon and my oncologist within the next month. I will ask them about it at that time. Would really like to know if this will pass or will it be an ongoing issue. Whew, it does seem hot to me!!!!!

  • Cstruble28
    Cstruble28 Member Posts: 1

    I worked an 6 hour day in 80 degree weather...... Sweating into my eyes, my shirt stuck to my back, but so happy to have the energy to do it!.... I was supposed to meet friends for dinner, but when I bent over to put my pants on, the whole world went wonky on me! I m dizzy, my head hurts, nauseous, and vision got VERY BLURRY!!! I used to love sweating.... It made me feel healthy.....


  • hqgross
    hqgross Member Posts: 2

    Oh my gosh! I could just cry when I read that I'm not alone with this heat intolerance! It's been 10 years since I went through chemo and radiation for breast cancer and I have been dealing with heat intolerance for as long. I live in central Florida so much of the year I have to hibernate from the heat.

    I have another similar side effect since the chemo- the left side of my body gets hotter than the right. My left breast was where the tumor was, so I have to assume that the weird heat pattern on my left side has to be related to the cancer and/ or treatment.


  • dlb823
    dlb823 Member Posts: 2,701

    This is quite an old thread -- 2009 -- but an interesting topic, so I'm glad it's been reactivated. I live near Palm Springs, CA, where summers are brutal. What used to be annoyingly long summers with a few ridiculously hot days, have, since my orig dx & surgery in 2008, become almost impossible for me to be outdoors. I no longer sweat on the side I had an mx, which is no doubt part of the problem, so that standing outdoors under the blazing summer sun for even a short time makes me ridiculously hot and crazy. Interesting to realize I'm not alone!

  • Connie1230
    Connie1230 Member Posts: 45

    I live in FL so I am not happy to read this post. So far I have had the opposite reaction. I freeze. My chemo just ended Tues. of this week so I'm sure things may change but right now freezing is my issue.

  • Kali44
    Kali44 Member Posts: 30

    I am sooooo happy to find this thread. I was always able to tolerate the heat pretty well. However, once chemo was completed and rads I noticed I would get this feeling like a million needles would prick me all over. I go through this quite often even when I take shower, if the water is too warm. Sux so badly....Def not looking forward to summer 😓

    Told rad onc about it and she suggested vit d........ and there is some improvement but not completely gone. We need help.

  • maryna8
    maryna8 Member Posts: 1,831

    I have this problem too, didn't know whether to blame it on chemo alone or on the neuropathy that I now have that was caused by chemo, by Taxotere to be exact. I used to love riding in boats on hot, sunny days; tried that last summer and was miserable while everyone else was soaking up the hot sun and having cocktails. I was drinking ice water and trying to survive. Summer is approaching again, if this persists I guess I will be soaking up the AC this summer instead of the sunshine!

  • hqgross
    hqgross Member Posts: 2

    Has anyone with this problem ever tried to find a cure or treatment? I have brought it up to different doctors and the responses I get are usually blank stares or nothing. I guess I've kind of learned that this is my new normal over the years but damn, if I could find treatment for this issue my life would improve tremendously!

  • castigame
    castigame Member Posts: 336

    for me body thermostat.went kaputt. One moment hot and the next cold.

  • kicks
    kicks Member Posts: 319

    For me - during and since chemo, cold IS a BIG problem. During Taxol infusions, I had to have a glassed in cubicle with it's own thermastat and warmed 'bankies' piled on to keep my temperature up - I was 94f one day.

  • MameMe
    MameMe Member Posts: 215

    I have had this heat intolerance also, in which I redden, sweat and feel anxious in the heat. I used to LOVE sunning, and the over all relaxation of being in the sun. Some combination of menopause and chemo changed all that. It varies in intensity. One doc. wants me to get thyroid testing, which will happen soon.

    On the bright side, I noticed some improvement this March when I was on a tx holiday, which is what the onc team calls the periods between treatment regimens. Visiting friends in FL, I spent several afternoons on the beach, laid out, sat in a bit of shade, and also walked the water's edge. MUCH better. So, I think perhaps judicious trials of sunshine with ample use of shade, might be the gray area between NO SUN and the old days of basking. I got some tan, first time in years!

  • POSITIVE-LIVING
    POSITIVE-LIVING Member Posts: 1

    I also have severe heat intolerance since chemo and having my ovaries removed. I also have hot flashes throughout the day, but the heat intolerance is different. It doesn't seem to matter what the temperature is inside, if I am even the slightest bit active, I'm burning up and drenched in sweat. I see my oncologist this summer and will ask him about it. I am also going to see the endocrinologist since I have enlarged thyroid and periodic over production of my thyroid. The heat intolerance is very debilitating and definitely the worst side effect of treatment. I wish you all weren't going through the same thing, but I'm glad to know I'm not alone. I am curious to hear from people who posted on this thread a few years ago to find out if they are still experiencing this or have found relief.

  • Mimi2kleh
    Mimi2kleh Member Posts: 62

    I have severe heat intolerance, going on six years now. Horrendous hot flashes got betterwhen I stopped the Arimidex, but the heat intolerance continues. My whole body turns bright red, and sweat pours down my face. I have a large fan in every room, and have them blowing on me 24/7. My sons even had to get me a fan for when I'm at their houses. I can't walk ten feet without getting drenched. Going anywhere, shopping, dr's appts, out to dinner, I am sweating. Any activity, wrapping a present, making the bed, everything makes me sweat, it's disgusting and I hate it. I've passed out from overheating, and that was in an air conditioned building. I keep a hand held fan and napkins in my purse to constantly wipe the sweat off my face, and to try and keep it from running in my eyes and stinging. My granddaughter drew a picture of me in kindergarten, and I was holding a fan. All my grandkids know that Grandma always has to sit by a fan, and they keep my spot for me, or immediately get me the fan. Not how I want to be remembered!

  • solitude
    solitude Member Posts: 4

    I can relate to being hot all the time. Thankfully I don't have to worry about others in the house. I can keep the fans on and the air at a comfortable level for me.

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    I am never comfortable. I am mostly really cold, but then it turns on a dime. We spent Wednesday at the Magic Kingdom and I thought I was going to pass out by 2 p.m. I had to sit in the shade for almost an hour. On the other hand, our courthouse is so cold that I have contemplated asking for a cancer exception to have a wool blanket. It is painful to be so cold. Sorry, ladies!

  • cajunqueen15
    cajunqueen15 Member Posts: 689

    I also want to add that I spend a ridiculous amount of time alternating my thermostat between 75 and 76 degrees. I really need a setting of 75.5, which I am convinced is right for sleeping. Lol

  • kicks
    kicks Member Posts: 319

    Cajungueen - I don't think that there are many who understand what it is to be COLD most of the time. Or how bad it HURTS. I can't go anywhere no matter how hot it is (into the 100's), unless I carry a light jacket with me when I go any building that has AC so that I don't shiver. I always keep an extra jacket in my car and a fleece throw (keep in Hubby's car too) just in case needed.

    Don't even begin to talk about winter. It is almost impossible to layer on enough clothes to not be HURTING in my whole body when going outside. My 'normal uniform' for being indoors is 3 layers to be comfortable. Then to go outside adds more layers including down jackets and insulated bibs, PACs (snow boots that are rated to -40f) , artic gloves and head covering.

    Summer or winter, to watch TV (Hubby has his recliner, I lay on the couch) and be comfortable I have to an electric throw turned on high to be comfortable.

    Yes it is not good to be dealing with issues of being hot, there is the opposite side that is not 'fun' to deal with either.

  • mucki1991
    mucki1991 Member Posts: 77

    I have heat induced hives with anaphylactic shock not related to my cancer. I developed this after a bout with mono as a child. It's believed that the shock and depleted immune system is what may have caused this. I take an insane amount of antihistamines with little to no relief. Recently I bought a vest that's holds gel packs that stay at 58 degrees and last for about 4 hours. It's not a cure for me but it's helps. It's also used on MS patients as Heat intolerance is an issue. It's called the polar vest. It's worth every penny. This could def help with your issues.

  • minustwo
    minustwo Member Posts: 13,283

    I'm with Kicks & Cajunqueen. I'm COLD. I keep my house between 78-80. That means I might be able to wear shorts sometimes as long as I'm not sitting around. I sleep w/a blanket & booties on my feet at 78 degrees. Sometimes I wear gloves on my hands. I too never leave the house w/o a jacket even though it is 100 degrees outside & 99% humidity. When I go to a play, I wear 3 layers with long sleeves under the jackets, and long wool knee socks & take gloves and a large throw and a wool scarf for my head. (yes, I have lots of hair so that's not the problem) Of course I live in Houston so even in January and through the winter, places have A/C blasting everywhere.

    Lucky I live alone so I don't have to fight about the thermostat.


  • yoga_girl
    yoga_girl Member Posts: 80

    Radiation only – I am COLD most of the time. During winter, inside I wear three layers of clothing to keep warm (three hats, shirts, pants and socks). Outside the same with a down coat and hood. Sometimes the cold is so bad I can't feel my fingers or toes. At night it's the same with a sheet, blanket and quilt. I always carry a pair of socks with me just in case. Ear muffs are a must (Oct-May) as my ears are very prone to get infections from cold, damp wind if outside.

    I do have heat flushes and it comes on out of the blue. If I don't get my body temp down, I will pass out or get sick. Sometimes I have to open the freezer door and put my head in or use ice packs to bring my temp down. If I'm out running errands I stop at a grocery store and go to the fresh produce section to cool off. During menopause I never experienced hot/cold flashes of any kind.

    Summer heat intolerance – before treatment I could tolerate 120+ degrees of dry heat, loved the beach, now it's all I can do to breathe if it's humid and hot in the low 80s. Can't wear fitted clothing anymore in the heat, it's like a plastic bag is stuck to my body. I have not been on an airplane since, not sure I could tolerate the cold temps and not being able to get warm enough in the high altitude.

    Good to know there are others experiencing similar issues.

  • yoga_girl
    yoga_girl Member Posts: 80

    side effects that may be experienced with the hot or cold spells as a result of treatments

    • Infections (50%)
    • Rash (39%)
    • Feeling tired (36%)
    • Diarrhea (33%)
    • Loss of appetite (30%)
    • Nausea (29%), vomiting (17%)
    • Weight loss (25%)
    • Cough (24%), shortness of breath (21%)
    • Abnormal taste (22%)
    • Headache (21%)
    • Pain in arms and legs (9%), back (14%), joints (20%)
    • Swelling of arms, hands, feet, ankles, face, or other parts of the body (19%)
    • Nose bleeds (17%)
    • Fever (15%)
    • Constipation (14%)
    • High blood glucose (14%)
    • Difficulty sleeping (13%)
    • Feeling weak (13%)
    • Itching (13%)
    • Dry mouth (11%)
    • Hair loss (10%)
  • kicks
    kicks Member Posts: 319

    yogagirl - have to tried a heated/electric mattress pad? They are contoured to fit the mattress the same as any mattress pad except it's like an electric blanket with control(s). There is an exception though in that they have 3 zones (at least all I've had did) with different variances of warmth to be more comfortable than the same heat throughout. The lower 1/3 (foot/leg area) is the warmest to keep feet nce and warm, the next 1/3 is a bit less warrm and the top 1/3 (upper body) is the least warm but still warm. Of course the control has setting as does an electric blanket.

  • minustwo
    minustwo Member Posts: 13,283

    I have two heated throws that I use all winter - which for me means under 65. They are cheap & easy to fine. I keep one on the couch and the other on the bed.