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Hot Flash Forum!

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Rennasus
Rennasus Member Posts: 642


The Hot Flash Forum is for anyone suffering from the dreaded hot flash.


BC.org has great info here on hot flashes, but I wanted to start a thread devoted exclusively to this icky, sticky SE of hormone treatment. Would love to hear how you deal with your hot flashes. Maybe between us we can alleviate some heat!


My Diagnosis: 12/8/2010, IDC, 3cm, Stage Ib, Grade 1, 0/8 nodes, ER+/PR+, HER2- History: BMX & TE 2/3/11; 3 incision revisions (2/19/11, 3/28/11, 4/26/11); right TE removed (delayed healing) 7/6/11; right TE replaced 12/1/2011; exchange 9/5/12. Took Tamoxifen from March 2011-August 2013; took Letrazole (Femara) from Nov 2013-April 2016. Took Breast Cancer Index (BCI) test at 5-year mark (Feb 2016) which showed I had low recurrence risk but also low benefit from hormonal therapy. So I stopped taking Femara in April 2016. I experienced severe hot flashes and bone/joint pain all during on hormonal therapy and it took a full YEAR before I experienced relief from the side effects. As I write this (Feb 2020), I still get hot flashes during the night (but nothing like it was before), and my stiffness and joint/bone pain is GONE. I blogged about my BC experience; my first post is here: https://thebigcandme.blogspot.com/2011/04/joining-cancer-club.html

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Comments

  • Rennasus
    Rennasus Member Posts: 642
    edited June 2011
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    My biggest complaint (and I have many about hot flashes!) is that they wake me up at night and then I can't get back to sleep. 

    I take Xanax to fall asleep, but then I am left with nothing to help me get back to sleep once the hot flashes wake me up. (Thank goodness I'm able to fit in a nap during the day as I'm only getting about 5 solid hours of sleep a night.)

    I'm wondering if taking Ambien will work better than Xanax in helping me get back to sleep. Seeing my doc this week and will ask him...

  • sgreenarch
    sgreenarch Member Posts: 253
    edited June 2011
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    Dear Rennasus,



    Thanks for starting this. I am getting wicked flashes since starting on Lupron shots two months ago. They were sweet warm flashes on tamoxifen and tho annoying, I couldn't see what all the fuss was about. Now I got my comeuppance. I seem to simply erupt in heat and then charming pools of sweat. I am also using Xanax to fall asleep and am grateful for at least those five or six hours. Haven't heard of anything better. Not sure I want to start with antidepressants, which I think I heard can help.



    Sorry I don't have any good answers. Will listen here with you to the wise ladies with experience.

  • sammolisa
    sammolisa Member Posts: 8
    edited June 2011
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    I break out in a sweat too.  Sometimes they are horrible!  I have to stick my head in the freezer when that happens.    I keep an ice pack with me to put on my neck and face while they are bad.  And lots of cold cold water!

  • starbeauty
    starbeauty Member Posts: 106
    edited June 2011
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    I keep a fan running on me 2 feet away all night long... With melatonin, vit d, and 1/2 benadryl I sleep fairly well most nights despite the hot, cold, hot routine.

  • Faithroad
    Faithroad Member Posts: 165
    edited June 2011
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    I had a hysterectomy after my BMX for prevention purposes.  So that was instant menopause.  Now I take Tomoxifen for five years.  I think my anitdepressant, imipramine, makes it worse; Imipramine has a SE of heat sensitivity, but I can't change meds. When at work, I will someimes use the restroom and run cold water on my hands and wrists.  Or put a cold can of pop on my neck or arms.
     
    I get super hot, and then shivering cold.  And I also get a prickly sensation on arms, legs, tummy, and it will make my skin feel sunburned when I touch it.  Sometimes I'll get a bit nausaus with the hot flash.  It makes it hard to concentrate when I'm at work, until I cool off a bit. But as much as I complain, I'm glad to be able to take something that helps with BC prevention.

  • trying2Bpositiv
    trying2Bpositiv Member Posts: 2
    edited June 2011
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    Starbeauty, I see that you are taking benedryl to sleep each night. I do not know if you are on tamoxifen or not but if you are you might reconsider taking the benadryl. I have read some where that some thing in benedryl blocks the affects of tamoxifen. Google does benedryl affect tamoxifen. There is a list of drugs you need to stay away from if on tamoxifen.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited June 2011
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    Melatonin works well for sleep. Anyone find their hot flushes (that's what we call them here) coincide with needing to pee? or just after a pee - trying to use delicate word for it. Mine are almost always linked. The acupuncturist said they are linked but the acupuncture didn't really help me much.

    One hint, seeing it's winter here, is to go outside to cool down. I'll be at my desk and constantly have to take off my jacket and then put in on again. So layers of clothes are a good idea. It sure isn't fun in Summer though.

    Sue

  • LtotheK
    LtotheK Member Posts: 487
    edited June 2011
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    I'm in chemo or Tamoxipause, and I still get those pesky flashes.  They make me feel awful,it's a lot more than just a sweat.  They have gotten better since chemo, but I still get at least 2 a day, and sometimes they are drippy and embarrassing.  I went dancing with some folks, and I find that I sweat more overall.  I was dripping, and it was so humiliating. One guy was even making fun of it--little did he know.

    I'm not sure what helps, but I have a hunch that a consistent workout schedule and limiting hot drinks and caffeine makes some difference.  I take fish oil, and probably could take more IUs (though oncologist requested I not take more than 100% RDA of anything with Tamox).  That is supposed to help.

    Mine during chemo were so bad there was NO WAY I would have considered a wig. So I know they can get a whole lot worse.  Man, this disease sux!

  • Rennasus
    Rennasus Member Posts: 642
    edited June 2011
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    Susieq: I always felt that my body woke me up because it was about to have a hot flash. So I wake up, then realize I have to pee. By the time I get back in bed, the hot "flush" is a-flashin' and I can't even try to go back to sleep until I am cold again (from kicking off the sheets). I repeat that cycle pretty much from 3:30 AM until I finally decide I've had enough and get up. So usually 3 times a night (early morning).

    Did your acupuncturist explain how the two are linked? And are you getting acupuncture for the hot flashes?

    LtotheK: I was taking flax seed oil but read that it could interfere with Tamox. So I stopped. I just take my multivitamin now. 

    I am very lucky, I don't "sweat" ... no real perspiration to speak of... I just feel like I am about to implode!

    The many gifts of BC. 

  • Lena
    Lena Member Posts: 132
    edited June 2011
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    FWIW: One Alteril tablet (Google it) an hour before bedtime, then a Lunesta right before getting into bed works for me.

  • omaz
    omaz Member Posts: 4,218
    edited June 2011
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    Thanks for starting this thread.  I have been having hot flashes since chemo.  Does anyone else get mildly nauseous just before they come on?  I also find that drinking lots of water is helpful.  For sleep I use melatonin 3mg plus chlortrimeton, which is an old-fashioned anti-histamine which I *think* is ok with tamoxifen.  That combo seems to allow me about 2-3 hours sleep between flashes. 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited June 2011
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    Implode is the word!!! The acupuncture didn't work, I still get them.

  • omaz
    omaz Member Posts: 4,218
    edited June 2011
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    acupuncture didn't help me with them either.

  • tamos
    tamos Member Posts: 23
    edited June 2011
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    Faithroad  I get the prickly sensations all over too! I thought it was just me or the Tamoxifen.  I had asked a couple folks who went thru menopause naturally and they did not get the pricklies. Have you found anything to help with that? I can usuallly handle the (lava) hot flashes but I HATE the prickly sensations I get.
  • Faithroad
    Faithroad Member Posts: 165
    edited June 2011
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    tamos - wow, I've never met anyone else who got the prickly sunburn sensations.  I thought it was an oddity to me!!!!   I thought maybe my antidepressant was interacting with the Tomoxifen...effecting my nervous system; but if it happens to you too, that idea is busted. 

    I'm sorry you have them too.  I haven't found anything that stops it from happening.  It always happens at night.  I hate it too. Sometimes I try rubbing my skin to make it go away.  I haven't decided if that works or not.  Let me know if you discover anything that helps.

  • marejo
    marejo Member Posts: 655
    edited June 2011
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    I am joining this thread so I can follow along and hopefully read something that will help.  My hot flashes started with chemo back in 2005.  When chemo ended the hot flashes did too.  Then they were back....then they were gone......then they were back.......then they were gone.  I think this is round 5 of them being back. This time they are pretty intense again.   They are so uncomfortable and make me feel awful.  Almost a claustrophic feeling. Six years now and still having them.  Each time they stop I always pray that this would be the end.  But nope.....they come back.  Sometimes I'll have a year break but they always come back.  I don't want to take any drugs so just deal with them the best I can.  Interesting reading how you all deal with them.

  • Beads
    Beads Member Posts: 14
    edited June 2011
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    I had my cancer after menopause but the chemo gave me the hot flashes again. They stopped the HRT I was taking  for way too long when I was diagnoused. They put me on prozac to help with the hot flashes and night sweats. They didn't work that great for me but I hear it works well for alot of people. Then I tried Black Cohosh Extract  you get at a heath food store,worked ok better than the Prozac. I still get flashes so this is a great forum to see if one thing will work for you and may be find something that will work for me.

  • 1Athena1
    1Athena1 Member Posts: 672
    edited June 2011
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    Hot flashes - did you say hot flashes - how about hot FLOODS or hot F5 tornadoes. There has to be a better descriptor for raining sweat and having to stand for hours naked in front of a fan. Oh, the awful memories. Rennasus, great idea to start this thread. I wish I had benefited from it when I went through my treatment.

    In 2009 I was on Lupron and Tamoxifen and the hot flashes were so bad that it was the only time in my life I was happy not to have a sex life. I would get on the train, a hot flash would appear spontaneously in rush hour and my face would just drip with sweat, while everyone else, including any big, fat, sumo-wrestler-like man, was dry as could be. Very appealing to the opposite sex, what.

    I finally refused Lupron shots and the hot flashes were in the top ten reasons for my deciding to forgo that death-in-life penalty. I actually went against advice and took Estroven to stop those awful flashes. On Tamoxifen alone, I had them steadily, six to seven times a day, but they were bearable. Now that I am off Tamoxifen, my body temperature is still chronically high although I do not technically have hot flashes anymore. However, if the temperature outside is 37 degrees F or warmer, I do not need a coat. Tall, strong, burly men have colder body temperatures than I. Today I have my period and this morning I went to my health club to work out. To get there, I had to walk for 20 minutes. It took me half an hour of pouring ice cold water over my head, neck and arms in the ladies' dressing rooms to cool my body temperature down sufficiently so that I would feel comfortable enough to exercise.

    Hot flashes. Yet another reason to hate summer in DC. Tongue out 

  • Rennasus
    Rennasus Member Posts: 642
    edited June 2011
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    Athena I relate to never needing a coat! It used to be I was always cold. But since Tamox, I can count on always feeling overheated. Except of course when I get the shivers & chills — which precedes every hot flash. I get the chills, then the hot flash comes, then I get completely overheated and then I feel chilled. It's like being in a half-working elevator. Up, down, up, down.

    I take a tall glass of ice to bed and drink it as it melts!

  • 1Athena1
    1Athena1 Member Posts: 672
    edited June 2011
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    My freezer is full of ice packs of all shapes and sizes.

  • mammalou
    mammalou Member Posts: 293
    edited June 2011
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    I have soooo had it with these hot flashes.  Mine were chemo induced and I have them all day and night.  I don't start Tamoxifen until after radiation and I hoping they don't get worse.  I just went to a Naturopathic doctor and she is prescribing me something that is supposed to help.  I'll let you know if it does.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2011
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    I keep the old fashioned hand fans everywhere, even in my hadbag!  When one starts and I know they are coming by the pressure in my chest, I just grab a fan and flutter like mad until they pass.  Great thread!

    Love n hugs.  Chrissy 

  • Rennasus
    Rennasus Member Posts: 642
    edited June 2011
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    Mammalou, if it helps, the hot flashes I have on the Tamox are much different than the ones I was having naturally (I am technically still in perimenopause). Not sure if chemo-induced flashes are more or less similar than "natural" ones. But the difference for me is that the heat of the flash lasts a lot longer — and it takes me a lot longer to cool off. Before they used to be short and sweet; now they take their sweet time coming and going. Sort of like the aging process!

    Ice packs are a good idea. How long do they stay cold? 

  • 1Athena1
    1Athena1 Member Posts: 672
    edited June 2011
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    Rennasus: They stay cold for a long time - hours maybe. But I am still hot - lol!

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited June 2011
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    The hot flushes I have are way worse than when I went though menopause. Now they are whole body ones - used to be just in my hair which was weird. I went cold turkey on the HRT too. Funny I haven't noticed many today, which might mean I'm in for more tonight. We have to learn to love them because, for me, it's a sign that the Arimidex is working.

    Athena - you are SO hot :)

  • MRDRN
    MRDRN Member Posts: 177
    edited June 2011
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    Thanks for this thread !  First time I read about the "pricklies"...YES that is exactly what they are and I too am thinking it is med side effect. Do you all have any bone pain that is new with the instant menapause?  I had recent labs done...everything is normal.  Scans are good showing arthritis but not mets I am told.  I want to go back to work but who can on no sleep?
    Getting sick of insomnia due to this pain. I am hoping that as time goes on past the TAH it also gets better.  Thanks for sharing your tips in dealing with this ladies.  My doctor recently started me on savella...so I will see how this helps in addition to the tramadol for pain in these dog days of summer.  This pain assessment was helpful:

    http://www.fibrocenter.com/fibromyalgia-pain-assessment.aspx

  • rgiuff
    rgiuff Member Posts: 339
    edited June 2011
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    I think exercising regularly helps with keeping them down to a manageable level.  I also have tried black cohosh and some of the other menopausal  herbal remedies.  I understand that these are not recommended, but I feel that they can't possibly be as strong as real estrogen, and since I think that I' might now be in menopause, I have less estrogen than when I started on this BC journey 3 years ago.  I never had chemo and still have all my reproductive organs.

    I just ran out of an herbal tea for menopause symptoms over a week ago. and since I've stopped using it, I feel like the flashes are coming are lot more frequently again.  I will resume with another remedy soon, because to me sleep is very imporatant, and the effects of being deprived of it worriy me more than the possible slight risk of using phytoestrogen supplements. 

    In the past, I also took a 6 week break from tamoxifen and found that that also cut down on the hot flashes quite a bit.

  • ShannonR
    ShannonR Member Posts: 89
    edited June 2011
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    CHILLOW - AWESOME

  • 1Athena1
    1Athena1 Member Posts: 672
    edited June 2011
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    Black cohosh helped me a little, I believe. I began taking it out of desperation after my second (and, I told my onc, last!) Lupron shot. I was not sleeping because of the hot flashes. My social life was non existent. I had to stand naked in front of fans all of the time. It was a traumatic experience. I almost want to cry when I think back to that period of my life. I was a prisoner. How was this in any way medicinal for me? Exercise was impossible. I would sweat too much. Perhaps black cohosh helped because my period came back and the flashes lessened.

    I had those tingly flashes too. One thing that helped me was to recognize as soon as the tingling began and, if possible, get in front of a fan and stay there for about three minutes. If I did that, I was sometimes able to head of a flash flood at the pass. However, the spells became so frequent that I couldn't keep stopping them, otherwise I would have had to do nothing else in life.

    Cold beverages did help.

  • margiebits
    margiebits Member Posts: 18
    edited June 2011
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    I have a Chillow too.  I love it.  Cools me down in the middle of the night.