Hot Flashes - came, went, back again?

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I was diagnosed with BC at age 50. I had been having occasional night sweats but was still having periods like clockwork. Chemo took care of that in a hurry and I spent about six weeks suffering from almost continuous hot flashes. I thought I would go crazy from the lack of sleep alone.

My periods never returned (as of now) and my MO put me on Tamoxifen since it wasn't clear that I was actually in menopause. I was warned about the SE of hot flashes with Tamoxifen but never had them at all. I joked that I must have used up all of my hot flashes during that horrible time in chemo! I quit taking Tamoxifen after three months due to a whole host of other problems. I have been advised by two MO's to try it again, but I'm not sure when I'll feel up to that.

Now yesterday I started having hot flashes again. WTH? Does anyone know what that means? I also noticed more vaginal discharge - things have generally been very dry in that regard since stopping the Tamoxifen. These seem to me to be contradictory things. Has anyone else had hot flashes for a while and then none and then had them come back?


Comments

  • edwards750
    edwards750 Member Posts: 3,761
    edited May 2018

    I have not but side effects from Tamoxifen can last months after you quit taking it. I had joint pain that continued on after my 5 years was up but thankfully only afew months.

    Can you take another med? I didn’t have unmanageable issues when I took it. It shouldn’t wreck havoc on your QOL. Besides there are a number of other drugs they can prescribe.

    Good luck!


  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited May 2018

    It may literally be your estrogen levels fluctuating. Hot flashes are a sign of estrogen depletion/dropping...eventually your body adjusts, but it could literally be that your body is adjusting to the depletion of estrogen. I have them....oh what a joy they are...ThumbsDown

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited May 2018

    I've been off Tamoxifen since December and all of the SE's resolved by about 6-8 weeks after stopping it. There is no other option for me since my hormone levels indicate a perimenopausal state.

    I don't think that these hot flashes are related to the Tamoxifen - especially since I didn't have them while I was taking it and have been off it so long. Rather, I'm wondering what this might mean for my hormonal status. Am I heading closer to menopause or further away? Anyone have periods come back after almost 1.5 years?


  • Peacetoallcuzweneedit
    Peacetoallcuzweneedit Member Posts: 233
    edited May 2018

    Hi NotVeryBrave I think that the hot flashes are related to the natural rise and drops of estrogen around perimenopause. Fifty is the average age of menopause...I think your chemo put a kink in your natural progression towards memopause and the Tamox added another, but I think the hot flashes you are experiencing now would most likely be associated with the body's natural process of the ovaries changing...you still have them correct?

    I have known quite a few women who had sporadic bleeding or a period after 12months of no periods (which is clinically menopause). I have always told them call your gyn because bleeding can be nothing or it can be something....

  • Lula73
    Lula73 Member Posts: 1,824
    edited May 2018

    so here's how hot flashes happen:

    Estrogen interacts with the hypothalamus to help regulate your body temperature. When there is an imbalance of estrogen the hypothalamus does not always receive the temperature signals correctly. A hot flash occurs because your hypothalamus incorrectly senses that you are hot. In response it sends a signal to your blood vessels closest to the skin surface to dilate rapidly to allow for heat dissipation. Since you really are not hot, when the blood vessels dilate you feel the heat whoosh through you. Your skin temperature can change as much as 8 degrees. (Just ask the lady giving me a facial yesterday-she removed a cool cloth I'd placed on my forehead and she said, “Oooh! Steam!") Yet your core temp stays normal.

    Having hot flashes stop and start again can be just a sign that the hypothalamus is having a hard time recognizing true temperature or that the estrogen is indeed fluctuating again. Your case makes it even more difficult to figure out due to the timing of the BC diagnosis, chemo stopping the periods (note that sometimes that's only temporary), the tamoxifen action, stopping tamoxifen, and your age now. My guess would be that since stopping tamoxifen your body is starting to react to the amount of estrogen that is being released from your ovaries. There can also be a backlog of estrogen in your blood stream too - remember tamoxifen does not stop estrogen production, it just prevents it from being able to enter the estrogen receptors on the cells in your body and it can build up in your blood. Meaning your organs/tissues may be getting flooded with it until your blood levels return to normal. Additionally, you still have estrogen being made from the aromatase action in your fat cells on the androgens released from your adrenal glands.

    Why could this happen so long after stopping tamoxifen? Tamoxifen has a very long half life. It takes 10 days to get to “steady state" and it has a half life of ~6 days. That means that it takes months and months to get the tamoxifen levels out if your system. If you only took it for 10 days, it would take over 30 days to get it out of your system. As those levels fall, certain organs/tissues will start coming back online slowly and start functioning again.

    Additionally, Menopause does not mean there is no more eastrogen being made by your body. Ovaries make ~80% of your estrogen. The adrenal glands release androgens which are converted to estrogen in your fat cells by the enzyme aromatase.This accounts for the other ~20%. Together they make up 100% of your estrogen production before menopause. After menopause, your ovaries stop producing estrogen, meaning 80% of your estrogen stops being produced and now the 20% that was being made by the aromatase activation process becomes your new 100% source of estrogen production. Note that the amount that's being made by this process does not increase. The percentage contribution changed because it is all the estrogen production you've got. It is this process that aromatase inhibitors or AIs prevent from happening.

    So yes, your estrogen levels can be in a state of flux months and months after stopping tamoxifen and cause hot flashes and/or discharge

    Hope this helps!

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited May 2018

    Thanks for the responses. Yes - everything always seems to be extra complicated with me!

    I had a pelvic sono done a couple of months ago because of an episode of fairly significant pain that seemed to resolve to the L groin area. I was told I had a cyst on the R ovary and the endometrium was 1 cm thick - which would be thick for menopause and okay otherwise. The plan is to repeat the sono at the three month mark.

    I did have a bit of spotting the day after the sono and thought maybe all of this was my body getting ready to start up with periods again. Nope. I'm thinking maybe it was just the vaginal probe. My GYN wants to be notified of any further bleeding and will review the next scan.


  • Falconer
    Falconer Member Posts: 1,192
    edited June 2018
    NVB, I'm answering yes to the question did anyone get a period after 1.5 years. I was on Lupron and an AI until November. Then this past Sunday woke in the wee hours to be greeted by that old friend. Bleh. But also noted- haven't had a hot flash since Sunday afternoon! The reason I remember is bc we were leaving my family's vacation home when I hot flashed and then remembered I left my Tamoxifen on the kitchen counter. So we turned around to get it.

    Thanks Lula for the explanation about how those hot flashes work. Wonder if they'll return after my period is over...
  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited June 2018

    Falconer - Curious as to why you switched from an AI to Tamoxifen?

    And bummer about the periods returning!


  • Falconer
    Falconer Member Posts: 1,192
    edited June 2018

    notverybrave, I was just miserable on the combo. I wasn't sleeping because my joints ached, everything hurt a lot, except for sex, which felt like nothing. I mean, my DH could've been rubbing my elbow or my lady parts and it felt no different. So my MO suggested the switch. He wasn't the one who started me on Lupron anyway. I had a brief MO who moved to FL after a few months with him. So I do feel better on Tam. I hope it's treating me right!
  • exercise_guru
    exercise_guru Member Posts: 716
    edited June 2018

    I switched to tamoxifen because of hand numbness and pain in my hands knees and hips. It was that or lose my job.

    Because I do not have my ovaries hotflashes are something I hope with regularly on or off tamoxifen.

    I chose to do on effexor because the hotflashes would wake me up all night.

    Paxil is supposed to work even better but I can't take it with tamoxifen.

  • pakeba
    pakeba Member Posts: 2
    edited June 2018

    I'm new to this forum. Was having horrible hot flashes that kept me up all through the night. Then I started taking Evening Primrose Oil gelcaps - 1200 mg, just once a day, and the flashes disappeared. Tomorrow I'll call my breast surgeon and see if it's ok to take this. I haven't seen any estrogen links so far. (My breast cancer was hormone receptive).

    If any one knows about the safety of EPO, I'd love to hear back

  • pakeba
    pakeba Member Posts: 2
    edited June 2018

    Hi everyone. I'm Pamela, a 69-year-old grandma, survivor of breast cancer in both breasts. Diagnosed in February of this year, had lumpectomies in both breasts May 1, and am now almost halfway through radiation (21 days). I've done 9 days of radiation so far.

    This past week I started having a horrible constant pain in my chest, and hurt even more when I inhaled. At first I thought I might have pneumonia because I'd taken care of my grandson on Monday and he had had a bad cough. But I got X-rayed and no pneumonia.

    The next day it was worse and went to another doctor. I thought maybe I'd inhaled some bleach cleanser I'd been using on the bottom of the tub each day (for athlete's foot). The doctor prescribed prednisone and an inhaler. I'm on my 4th day of prednisone.

    The pain has moved over to the left side now, but I'm feeling really spacey and don't know why. I got paranoid that the window A/C unit in my bedroom was putting out mold spores and they were getting into my lungs. So I slept in the extra bedroom last night. I have bi-polar disorder and know that prednisone can cause some bad stuff. I just feel really listless, like I don't want to do anything.

    Can anyone identify with and/or help me with this, please?

    Thanks!

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited June 2018

    Have you seen or talked to your radiation oncologist? If not - you should. I would be concerned about the ongoing radiation with respiratory symptoms. It could be causing them or at least contributing to them.


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