Tamoxifen or arimidex opinions please

ganzgirl2010
ganzgirl2010 Member Posts: 235
edited March 2015 in Hormonal Therapy - Before, During, and After

I had my ovaries out in November of 2014. I had some mild hot flashes but nothing I couldn't handle.  My onc started me on tamoxifen a couple weeks ago and the hot flashes were unbearable ! I didn't sleep for three nights. I called my onc 5 days after I started the tamox aand told her I was not taking it anymore. She wants me to start on arimidex. Im scared to start it because if what I read about those SE's. Help !! Im thinking about NOT havinf hormone therapy but Im scared to NOT have it at the same time. If anyone can give me advice or tell me about what SE's you've had it will be such a help in deciding what I should do. Thanks ladies :)

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  • Mabs
    Mabs Member Posts: 36
    edited March 2015

    I've read that Aromatase inhibitors tend to cause fewer serious side effects than tamoxifen, such as blood clots, stroke, and endometrial cancer. But aromatase inhibitors can cause more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen, at least for the first few years of treatment.

    But this is what they tell us... I also prefer to hear from people who are taking the AI... Mostly thoses that are premenopausal...

    Thanks

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  • new2bc
    new2bc Member Posts: 559
    edited March 2015

    Everyone is different as far as side effects. I recently switched from Tamoxifen to Arimidex and I have more problems with sleeping. For anyone who is thinking of not taking Hormonal therapy because of the side effects, I would like to share this information that different manufacturers add different fillers which causes different side effects. If you try Tamoxifen and you can not handle the side effects, look at your bottle and see who manufactured it. Then next month switch to another company and see if the side effects are less. Try it and then decide if you can handle it or not. This way you won't blame yourself in the future for not trying. I am going to try a different manufacturer for generic Arimidex to see if it helps with my sleeping problems.

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  • Racy
    Racy Member Posts: 2,651
    edited March 2015

    You did not say your age or diagnosis. Those factors could influence the decision about the best drug for you to take.

    I take an AI, Femara, and the only side effect I have is hot flashes. These can be greatly reduced if you also take Efexor. Consider asking your doc if you can try Efexor. Many of us take it.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    I second the Effexor suggestion. I'd consider starting it ahead of the T or AI. Get snug in it then try the hormonal therapy again. I'll bet you see a difference

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited March 2015

    new2bc ohh good suggestion ! Definetly going to talk to my onc about this

    racy and farmerlucy..sorry I didn't realize my stats don't show when you start a new topic but they should be beneath my reply now. I am 42 and I guess post menopausal ?? Like I said , I had my ovaries out in November 2014 and had a hysterectomy in 2003(many uterine fibroids). I have been on Effexor since December. My pcp just increased my dose last month from 37.5 twice a day to 150 mg once a day. I still don't notice anything different.

     


     

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  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    I've been on arimidex for 5 months. So far the only SE I have is hot flashes. They seem to be lessening the longer I'm on the drug. They are not as bad as the hot flashes I had during menopause. I do worry about the bone loss, especially since my MO is recommending 10 years, but I worry more about the cancer returning. 

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  • muska
    muska Member Posts: 1,195
    edited March 2015

    Hi ganzgirl2010, I have been on anastrozole (generic version of Arimidex) for a year. I have very mild side effects if any, some stiffness and overall dryness - hair, skin, etc. Nothing major or too annoying. No hot flashes, sleep is fine. Regular exercise helps to minimize stiffness. But as others said one cannot predict what the side effects would be until you try. Also, with both tamoxifen and AIs it takes a few months for the body to get used to it and SEs experienced at the beginning often subside.

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  • grammakathy
    grammakathy Member Posts: 407
    edited March 2015

    I was on Arimidex for 9 months and hardly slept. I would wake up totally awake after sleeping for only two hours. My MO switched me to Tamoxifen and I have had only minor side effects. From what I've read, I feel Arimidex would be more effective for me but I needed some sleep

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited March 2015

    Grammakathy It was the opposite for me I got no sleep while I was taking the tamox. I started it on a Monday and the next night and the following 3 or 4 nights I didn't sleep at all. By the 5th day I was delirious from lack of sleep. I called my mo crying and told her I was done with the tamox so she wants me to try arimidex but Im scared to. I had more side effects on tamox than what everyone is saying they have had. I had severe left leg pain especially in my calf, I was a raving bitch, probably from lack of sleep lol. The hot flashes were not happening just at night it was more like all day and night followed by chills. and some other se's.

    Muska...I know se's are different for everyone but normally I don't get any or very minor se's from any pills period. I was just looking for input from others as to what  they have experienced

    I am definetly going to call my mo Monday to ask her about switching manufacturers and if that would help me, if so then I will try the tamox again

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  • DSW1976
    DSW1976 Member Posts: 118
    edited March 2015

    I just went to my onc today to discus this. I was thinking of not taking anything at all since I did surgery and 5 months of chemo. He said I have a 60% chance of cancer coming back if I dont take anything at this point. He said I will be on tomaxifan as the other causes joint pain and I have osteoporosis and severe pain now. I will be on herceptin as well, he said they still dont know if herceptin really works yet. Scary thought to it all. I asked about just getting a hysterectomy and be done with it all. No it doesnt out weigh the risks!? I have trip positive and very agressive so that may be why. I have a 50/50 chance its else where right now going for ct scans next week wanted pet but he said to many false positives. Im still lost and confused but will try tomaxifan and herceptin and I know everyone is diff w s/e so i have to see for myself.

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  • new2bc
    new2bc Member Posts: 559
    edited March 2015

    grammakathy,

    Which company made your generic Arimidex? I have the same problem where it is hard to go back to sleep if I wake up to go to the bathroom in the middle of night. I am using Teva brand right now. I will try to test with different manufacturers to find one with less side effects. Ladies do not give up on hormone therapy until you find one with side effects you can handle.

    I have a question for people who are using effexor. Do you also have depression or you are mainly taking it for hot flashes? I looked at the side effects of this drug and it may not be good for people who have thyroid disease, kidney or liver disease, etc.

    I think everyone of us should have depression by now after breast cancer!


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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited March 2015

    new2bc..I thought my doc put me on it for anxiety, I don't recall her saying it would help with hotflashes but it seems that most of us are on it for them. I don't have depression, just anxiety,

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    I have been hypo-thyroid for about ten years. I haven't heard of that issue, but who knows. I have had issues with mild depression most of my adult life. I find that just the 37.5 mg takes the edge off. I tapered off last fall just to see if I could, and while I was sucessful, I felt my old irritable self coming back, plus the HF were much worse.

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