Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Hot flashes! Not a question, just venting...

I was on Tamoxifen for months with virtually no side effects, but eventually the hot flashes kicked in (I know, it could just be middle aged woman syndrome, but I blame the Tamoxifen). It is just out of control! I think I have taken my sweater off and put it back on 10 times in the past hour. Every night I wake up sweating like crazy and radiating heat like a furnace, sometimes 10 times in a night (even my husband gets too hot just sleeping next to me).

I had heard about this, but really never understood it until now...

If anyone wants to complain, be my guest - misery loves company?

Rachel

Comments

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022

    TwoforOneSpecial - UGH!!! I hate the hot flashes.They started during chemo and I would carry around a personal fan with me everywhere I went. They have since eased up, but still happening. I hate them! The worst ones are the ones when I''m blow drying my hair right after a shower (I don't wash my hair everyday), those bother me more than the night hot flashes. I don't sweat during the night hot flashes anymore thank goodness. I just hope that they go away permanently some day real soon!

  • rah2464
    rah2464 Member Posts: 1,192
    edited January 2022

    TwoforOne yes they are lovely aren't they? I am the crazy woman driving with both car windows down when it is nine degrees outside because I am roasting alive. I never used to enjoy winter so much but now that I can dash outside to cool off . . .

  • Aklynna
    Aklynna Member Posts: 28
    edited January 2022

    My dr prescribed Magnesium Oxide and my hot flashes went from hourly to only a few mostly at night.

    It is an over the counter supplement, it i had trouble finding it so had them call in a scrip.

    The “oxide” part is very important! Other forms of magnesium are used for other purpose

  • armom4
    armom4 Member Posts: 82
    edited January 2022

    Oxybutynin worked amazingly for my hot flashes. Maybe it could help you. If you're interested in trying another med.

  • illimae
    illimae Member Posts: 5,569
    edited January 2022

    I hate them too! If I’m getting hot before falling asleep, I have a popsicle. Problem solved in a yummy way 😁

  • serendipity09
    serendipity09 Member Posts: 769
    edited January 2022

    They happen throughout the day, but like I said not as often, but I have one very night at 8:02pm, then they continue throughout the night until about 5am. I might have to have a couple popsicles at 8:00pm, lol. Thanks illimae!

  • findingoptimism
    findingoptimism Member Posts: 31
    edited January 2022

    My least favorite were the 3 a.m. ones where you wake up, know it’s coming, but are powerless to stop it. Then you can’t get back to sleep because you are dwelling on how hard the next work day will be.


    I also could count on one about 30 minutes after dinner. Fan at the ready

  • kblack
    kblack Member Posts: 1
    edited January 2022

    YES!!! The hot flashes are awful. I am coming up on my last 6 months of Tamoxifen....so 10 years out from diagnosis. Chemo put me into menopause (I was diagnosed at 37), then I came out of menopause....then with Tamoxifen, I was in the worst possible circumstance where I was getting my period AND having hot flashes. Thankfully now my period has seemed to have disappeared (for about 18 months so I am hopeful it is gone). But the hot flashes are so awful. And I can't remember where I read this, but I believe that there is a hormone that the body sends out just ahead of the hot flash. This hormone actually wakes us up (again don't quote me, but I feel like I remember reading about this) and so, when we wake up in the middle of the night, we might think, ok, it's a hot flash, but hopefully it is partially done. And that was where I remember my A-HAH moment - when I read about this - because that's the irony - the body wakes us up before it even begins so we can truly "enjoy" the full experience.

    You are in good company!! The side effects of breast cancer treatment seem to be limitless.

  • cbk
    cbk Member Posts: 323
    edited January 2022

    Ugh! Terrible hot flashes, fatigue and irritability. I was surgically placed in menopause and then slammed with Arimdex…. Not a pleasant combo.

    I tried Relizen and it has helped tremendously with this. It’s a little pricey but for me it’s a slam dunk. My oncologist OK’d it!

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35
    edited January 2022

    Thanks for all the med suggestions everyone - I have an appointment with the MO on Monday, so I'll ask about them. I'm particularly interested in Oxybutynin, since it says it's supposed to be for overactive bladder - I might not have this condition officially, but if it helped me not have to get up to pee 2-3 times every night that would be a bonus.

    Kblack - I hadn't really thought about it before, but yes - I wake up first and then a minute or two later start to get warm, and then hot, and then catch on fire... I kept thinking that if only I could keep myself from waking up then I wouldn't have the hot flashes (no, that's not logical, but it's what I thought) but now I've looked it up and it seems accurate that the hormones first wake you up and then melt you.

    I was just making a list of things to ask the MO about, and was rudely reminded of my other main issue - I get these crazy cramps in my calves and feet. At least with my calves I know how to stretch them (and mostly have learned to keep my feet flexed when I stretch my legs in bed - that helps a lot), but the cramps in my feet are so crazy and I don't know what to do... I can't even really tell what muscle is cramping or how to stretch it. Sometimes it's a toe, sometimes some other spot, and it's really painful!

    I am also going to at least ask about a lower dose of Tamoxifen, since there are studies that show it is equally effective and with fewer side effects.

    Ugh, such fun things to think about and deal with...

    I'm fading, so off to bed.

    Rachel


  • spookiesmom
    spookiesmom Member Posts: 8,167
    edited January 2022

    I get those crazy foot/leg cramps too. On letrozole and a diuretic. Wanted to blame that. But for me, I found on the days I don’t eat enough protein, the cramps come. Increased protein, no cramps. Maybe I’m just really weird.

  • islas39
    islas39 Member Posts: 3
    edited January 2022

    I’m happy I’m not alone. I’m suffering through the hot flashes myself. I sweat so much, it’s so uncomfortable. I literally want to run away from my body it’s so discomforting.

  • TwoForOneSpecial
    TwoForOneSpecial Member Posts: 35
    edited February 2022

    Saw the MO today, and he is prescribing Celexa, which has about a 50% chance of significantly reducing hot flashes (and hey, even if the hot flashes don't go away, maybe it will help my mood?)

    Anyone tried this? He said give it 2 weeks on a very low dose, and if no improvement I'll up the dose for another 2 weeks. If that doesn't do it, his next suggestion is to stop the Tamoxifen and switch to ovarian suppression and an aromotase inhibitor. For no well thought out reason I really don't want to go the AI route (well, the thought out part is that I don't want to have to go in for an injection every month).

    I also let him know that I had called his office and left messages FOUR TIMES in December, with a specific question, and I never got a call back. Not his fault if he never got the message, but he's in charge and needs to make sure that does not ever happen!

  • salamandra
    salamandra Member Posts: 735
    edited February 2022

    TwoForOne,

    That is so frustrating. I'm also sorry to hear he would you push you straight from tamoxifen onto AIs without even trying toremifene. Are you able to get a second opinion and maybe switch doctors?

    I get cramps (mostly calf) sometimes that I don't think is from the meds, but I take magnesium before bed and it works great. Apparently the type of magnesium matters but I was reading so many good things and got tired of deciding so I just get one that has 3 different types in it. It could be a cheap and easy thing to try.

    Good luck with the Celexa!

  • serendipity09
    serendipity09 Member Posts: 769
    edited February 2022

    Islas39 - that is exactly how I would describe it, wanting to run away from my body as the hot flash is about to start. Mine have been happening much more often recently and I hate them. I was put on gabapentin to help with neuropathy and they said it would help hot flashes and it did for about 2 months, UGH!!

  • lalbo
    lalbo Member Posts: 68
    edited February 2022

    Salamandra - which magnesium do you take? Happy

  • salamandra
    salamandra Member Posts: 735
    edited February 2022

    Lalbo,

    This is the one I take: Triple Calm Magnesium.

    It's not the most expensive but it's not the cheapest either. If someone nailed down just one form they wanted to take, I'm pretty sure you could get it cheaper. But I've never been a good sleeper even before the cramping issue so I figured whatever sleep benefit I might get from mixing up the magnesium could be worth it for me.