Tamoxifen Reactions

bbarna
bbarna Member Posts: 12
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have been on Tamoxifen for 2 and half months. My hotflashes, sweats, chills have just been getting worse. At times they are better. But I have bouts about every 1 and half hours 24 hours a day. My doctor now has put me effexor to see if that will help. So far it hasn't. My question anyone who has been on Tamoxifen does it eventually get better. My doctor says that 6 months it should start to get better. I do not know if I can continue with this treatment. I do exercise 4 times a week. I also have several autoimmune diseases. Lupus, Sjogrens, and Fibromyaglia.I know the dangers if I stop the tamoxifen but I am having difficulty wanting to continue with these symptons. Any one out there that can help?

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  • pickle
    pickle Member Posts: 1,409
    edited March 2012

    I know the hot flashes and night sweats are hard to deal with. I truly feel for you. I was on Tamox for 2 years and it did take me a long time to adjust to it but it did get better. How long have yiu been on Effexor? My doc gave me Effexor xr and it helped a lot but it took a few weeks to really see a difference. It definitely reduced the flashes and sweats and helped my mood. I am on Aromasin now and I have just increased my Effexor to help with mood. The biggest thing I have now is sleep disturbance. It is really hard to feel great when I don't get a solid sleep. I am taking Effexor at night to see if that helps.

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  • Pegs
    Pegs Member Posts: 198
    edited March 2012

    i hear ya, the hot flashes are terrible, i was getting them every half hour, i timed them and they came right on time.  effexor has helped but it does take time , i take 1 in the am and 1 at night.  i still get them but not nearly as bad.  for sleep i have to take something too, i hate taking so many pills but i cant work without good sleep.  i have been on tamoxfen for about 1 year,  had to take breaks before some surgeries but not for long.  hang in there

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited March 2012

    I've been on Tamoxifen for about a year too. It does get better. I still have days with multiple hot flashes, but nothing like the 50/day I was getting before. It was insane!

    I was on Effexor too, but a low dose and it didn't seem to affect the hot/cold flashes. My doc told me it needs to be a pretty high dose to help. 

    I wanted to add that I'm off Effexor now and I will NEVER go on it again. I'm not one usually sensitive to drugs, but getting off that stuff I felt like a true addict. I was sick (throwing up, headaches, dizziness, muzzy-headed etc.) for at least a month and that was with a slow weaning program. Yuck.

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  • Lories
    Lories Member Posts: 351
    edited April 2012

    Hi bbarna-I have been on tamoxifen for a year. Before that 2 years with Femara. Femara gave me terrible joint aches so I switched. My hot flashes have been bad too, so I asked for help. The nurse practitioner suggested either Effexor or Gaba something. Sorry I am out of town away from my rx bottle. It is an anti seizure med and it helped instantly. Ask if you can try it!



    My best!

    L

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  • dobie
    dobie Member Posts: 424
    edited April 2012

    Lories - That would be Gabapentin. It is generally a heart drug but has been shown to have some modest effect with hot flashes. For those who wish to avoid the SE of effexor, consider acupuncture. There has been a couple studies indicating that it is as effective as Effexor without the SE and even has some added benefits such as improved mood, sleep, libido. A study was done by my rad onc, Eleonor walker, and published about 5 yrs ago. Henry ford hospital in Detroit has a integrative medicine center with acupuncturists who treat BC pts on endocrine therapies. Might want to check it out in your area. Unfortunately insurance does not usually cover expense of acupuncture but of course will cover the SE infested drugs. Crazy.

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  • dobie
    dobie Member Posts: 424
    edited April 2012

    Lories - That would be Gabapentin. Also the drug Clonidine is sometimes used for hot flashes. It is generally a heart/BP drug but has been shown to have some modest effect with hot flashes. For those who wish to avoid the SE of effexor, consider acupuncture. There has been a couple studies indicating that it is as effective as Effexor without the SE and even has some added benefits such as improved mood, sleep, libido. A study was done by my rad onc, Eleonor walker, and published about 5 yrs ago. Henry ford hospital in Detroit has a integrative medicine center with acupuncturists who treat BC pts on endocrine therapies. Might want to check it out in your area. Unfortunately insurance does not usually cover expense of acupuncture but of course will cover the SE infested drugs. Crazy.

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  • rakulynda
    rakulynda Member Posts: 286
    edited May 2012

    I was on tamoxifen for 2 years then switched to femara. Femara gave me BAD joint pain but managed to hobble thrugh it for another 3 years. At the time, was given Celexa for hot flashes and it did help some after a few months (effexor at that time was not on my insurance formulary).

    Fast forward 9 years later and am now on aromisin. S.E. not so bad but the night sweats were horrendous and waking 8-9 times a night wasn't working either. Onc. prescibed gaboplentin (usually given for seizure disorders, ha) but night sweats are gone. I take an ativan at bedtime and only wake once a night to pee. I hate taking all these meds - meds for ca, meds for side effects of ca drugs, meds for side effects of side effects. . . but for me, the relief is worth a better quality of life.

    Everyone reacts so differently to these stupid drug combos and I think it might take some tweaking to find what works for you.

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  • Kleenex
    Kleenex Member Posts: 764
    edited May 2012

    I've been on Tamoxifen since December of 2008. The side effects DO moderate with time. Originally it was just a festival of fun: flashes, skin changes, random discharge, menstrual tsunami with no pattern. :( Now things have sort of stabilized. I tend to have a bit of mild discharge, so I wear panty liners every day. My period shows up every 40 - 60 days, and mid-cycle, I have a week of pelvic discomfort and major flashes that I believe are a result of the old ovaries trying to whip up an ancient egg (I turned 49 on Friday). My period is ridiculously heavy for two or three days.

    I also get flashes when the weather initially changes and gets warmer and/or more humid. The ol' body temperature maintenance systems are just a mess. I can literally tell with my hands and feet the "true" temperature, but my neck, trunk, upper arms and thighs will think it's HOT. Really weird.

    What has helped:

    Melatonin, Benadryl (just every once in a while, since it's not great with Tamoxifen), or a Xanax-like drug to help me sleep during a flashy phase to minimize daytime psychosis due to sleep disruption. These meds don't eliminate the flashes, but they do help me sleep through them or return to sleep after them.

    Cooling off the bedroom - I actually have a portable a/c unit we found at Lowe's. We try to keep the bedroom at about 65 - 68 degrees year-round. Doesn't keep me from having flashes, but it sure kills them off quickly.

    Chillow - I either sleep with one in my pillow or drape one across my midsection during a bad phase.

    Exercise and weight loss. I try to walk 30 minutes at least once every day. I have lost about 3 - 5 lbs over the last 6 months or so, but it's all in the midsection, so my clothing is looser, which helps. The exercise in general seems to help how my body maintains temperature.

    Flashes during the day aren't as bothersome to me, although that feeling of impending doom that can come first is a pain. The exercise seems to help with that.

    Good luck to you - I like to pretend I believe it's helpful. I have a friend who had triple-negative cancer who can't take anything, and she'd LOVE a handful of Tamoxifen and its side effects if it would make a difference.

    Coleen

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  • PatsyS
    PatsyS Member Posts: 3
    edited September 2012

    Hi everyone, I have been on tamoxfen for 7months and about 2months ago the hot flashes have stopped, I have not talked with onc yet. I'm getting ready to turn 50. Didn't know if that was normal?

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  • Butterflylady2012
    Butterflylady2012 Member Posts: 187
    edited October 2012

    I have been on Tamoxifen for 3 weeks or so.  I have not had any side effects so for, the hot flashes, or any of the not so fun reactions I have heard about.  Am I the lucky few?  Does the Tamoxifen build up in my system and then the SE's begin?  If I don't have any, I will feel truly blessed with all that has happened to me in the last 5 months.  I just want to know if this is the calm before the storm....

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited October 2012

    My evil side effects started right away, and I couldn't take it, but my mom never had any side effects at all, so maybe you're just able to tolerate it with no problems. :)

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