Hot flashesa year later

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JeanieLou
JeanieLou Member Posts: 3
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

At 50 yrs old I suddenly started with hot flashes every 20 minutes 24/7. I took Premarin for 10 years. Several times I tried to wean myself off but the hot flashes would come right back. Last December I had an abnormal mammogram so they wouldn't renew my Premarin so I had to quit cold turkey. I had DCIS .5 mm, a lumpectomy with 1.5 margins, ER+, did 7.5 weeks of radiation. I have been experiencing extreme and frequent hot flashes since then (at least once per hour) along with night sweats. This started before I started taking Tamoxifen. I'm basically either burning up or freezing all the time. I started taking Tamoxifen in June. 

I have tried a chillow - it worked for the first hot flash - after that the water was boiling (Wink)
I think so didn't help. I tried Clonidine but couldn't handle the dry mouth. Took Effexor all summer but it didn't seem to help, and there is evidence that it may interfere with the Tamoxifen so my doctor wanted me to stop that. I keep my house cold, I have fans all over the place and basically live in front of fans, a huge ice pack in the freezer to put on my head when it really gets bad, but if I go out to someone else's house, or to a restaurant, to church, shopping, I can count on
having several sweat-dripping-off, hair-soaking-wet hot flashes with not much that I can do except blot with a tissue or fan with a magazine. I've been told no soy, red clover, black cohosh, etc because they are plant estrogens. Does anyone have any other suggestions?

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  • Shirlann
    Shirlann Member Posts: 3,302
    edited December 2008

    Hi, what a mess!  I am so sorry you are in such a fix.  I went through menopause without hormones, about 30 years ago, and I know what you are going through.  I had so much cancer in my family that I did not want to take any hormones.  Well, got breast cancer anyway.

    I don't have any other suggestions, except for most of us after a year or so, they slow down and gradually disappear.  Stupid things.  Sure messes with your life.  I am so sorry.  

    As a person who did nothing and also had an abrupt menopause (believe it or not I got sick in Egypt at age 45, went into instant menopause, never had another period and had just what you have), I know what you are going through.

    Hopefully, some other sisters will be able to help.

    Gentle hugs, Shirlann 

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  • vickyb361
    vickyb361 Member Posts: 26
    edited December 2008

    Jeanie,

    I was forced into menopause during chemo but didn't really have any hot flashes until I was put on Tamoxifen after surgery and radiation. I was having at least a dozen a day but they seem to have calmed down a little, now about 8 a day/night. I've been on Tamoxifen 8 months.  I can't do anything to stop the hot flashes but when one starts I use a little hand held fan. My husband bought me 4 or 5 of these little personal fans and plenty of batteries. I keep two in my purse along with extra batteries and the rest around the house. I can usually grab one quickly when I feel a hot flash starting and it does make it easier to get through.   

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    No great answers.  Sorry.  I started Tamox 3.5 years ago and the hot flashes came with a vengeance.  But I'm not certain it was the Tamox, could have been natural as I ALSO went through menopause during my 3 year course of treatment.  For me the very worst side effect was debillitating fatigue. But the hot flashes were a close second.  Very little sleep.  Like you, I had fans placed when I gave up on everything else.  I slept in the nude, no sheets, overhead fan, air conditioning, plus a tall fan blowing straight at me about 6 inches from the bed.  NOTHING helped.  I will say I got a respite when I switched to an AI.  I was SO excited and thought I'd stopped "flashing".  Let me tell you it's even worse when they come BACK after you'd mentally prepared yourself.  My onc put me on ... what is it ... and anti-depressant to see if it would help.  I THOUGHT it did.  Then I stopped it and that's when they came back. But I went back on the anti-depressant and they're still frequent, intense...crazy!  So...?  I know some doctors try that.  Or...she was just trying to get me on an anti-depressant, who knows.  I know any sort of exertion (ANY...walking along and carrying a jacket for goodness sakes!) can bring on a big flash.  I've had to expose my fat bare arms to strangers because I was worried I'd pass out. So...I'm sorry I don't know any answers.  I had ice water everywhere too.  Hey, that reminds me that I don't do the fan at my bed or the ice water on my nightstand now.  So the AI flashes are at least still better than the Tamox flashes.  I guess be glad you can take them.  My friend took nothing and she just lost her battle.  So...hang in there.  It's tough but worth it.

    One more thing...it's funny you post about freezing.  I don't see many people say this.  When I was younger I was NEVER cold.  But, for about 5-7 years before diagnosis...I simply could NEVER get warm.  It was crazy!  Now...like you...I sit at my desk all day turning my heat on and my fan off...then my heat off and my fan on.  It's crazy, to be sure.

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  • pod1257
    pod1257 Member Posts: 262
    edited December 2008

    What a mess! - I have been suffering with hot flashes too for 2.5yrs, since dx. First on tamox and zolodex and then had ooph in Feb. 08 and now on femara. The zolodex was a killer. Relentless flashes and I know what you mean about one minute freezing and the next minute sweating. - It is the worst feeling. So cold you are almost shaking. then get all bundled up and feel great for about 1 minute. Then dying of heat and peeling the clothes off.Undecided

    My hot flashes are some better in the last year. I have never found anything that helped much, though. I know staying away from caffeine and wine helps. Exercise is supposed to help as well. Obviously keeping the room cool. - I know the minute my DH turns up the AC. I do best around 71 degrees. The minute it gets to 72, I'm in trouble.

    I have read some women do really well on nuerontin (gabapentin). I tried it for awhile but it made me very dizzy, even at a low dose. - But it did help alot. Maybe you could try that?

    Good luck to all.

    Julie

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  • JeanieLou
    JeanieLou Member Posts: 3
    edited December 2008

    Thank you everyone for your responses, although you didn't tell me what I wanted to hear - that there was some magic something out there that would stop the flashing. I will ask my doctor about nuerontin.  I'm doing better now because it's winter and cooler, but during our hot summer (Memphis) I was steaming. Plan B may be to move to Alaska!

    University of Tennessee Health Science Center and the Susan G. Komen Foundation are doing a research study here of women taking Tamox and hot flashes. One of the criteria to join the study was that you had to have at least 14 hot flashes a week.  A WEEK!!!!! That's 2 per day!  If I had only 2 hot flashes per day I wouldn't HAVE a problem!!   The study is based on using a nicotine patch, and I'm alergic to adhesive so can't do a patch.

    Jeanie

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited December 2008

    Jeanie,

    This is probably not a useable idea...but thought I'd pass it along anyway.  Some of the "patch" meds are dispensed through a section of the patch that's inside the adhesive (and not sticky itself).  If it's that kind of patch, I wonder if you could snip the adhesive off, then use one of those "self-adhesive" (doesn't stick to anything but itself) bandages to make it stay where you put it.

    Just a thought...

    LisaAlissa

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