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A MyBCTeam Member asked a question 💭
Interlachen, FL

I was diagnosed with HER2+++ in September 2012. I underwent a unilateral mastectomy, a year of chemo, and refused radiation. I have been on Tamoxifen for 14 months but just recently stopped taking it because the side effects were becoming almost debilitating. (I haven't told my Onco yet). I had a discussion with my gyno about stopping Tamoxifen and he told me about another drug called Evista (Raloxifene). Apparently this drug is better, does the same thing as Tamoxifen and has way less side… read more

July 10, 2014 (edited)
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A MyBCTeam Member

I had the same leg and feet cramps and pain. It was intolerable. I was 45. Sixteen months after chemo start my periods resumed their cycles. Tamoxifen DOES NOT cause premature menopause, in fact many women continue to have cycles on it. If your hysterectomy was total then I'm not sure why they didn't out you on an aromatase inhibitor instead (?) but if you still have even 1 ovary they wont or if your luetunising hormones are still active. The bottom line was that after five months of misery on Tamoxifen I had my doctor run a prognosticating calculator and it turns out tamoxifen only offered (in my case) a 1% benefit! I was also her2+++ and he said that was my greater risk for recurrence and I'd already don't a year of Herceptin. I quit tamoxifen with his blessing and never looked back. That was 5 years ago!! He said of all the women in 30 years on that drug without recurrence we will never know how many wouldn't have had recurrence anyways! Get the actual numbers then make an educated decision for yourself. 1% was just not enough for me. Every case is very individual. Ask for "newadjuvantonline" it's the one that includes her2 and Herceptin.

July 13, 2014
A MyBCTeam Member

That's great! It sounds like you're tolerating Tamoxifen well. I on the other hand did not. You would think that after 14 months my body would adjust to it but it didn't. My side effects just continued to worsen. My legs and feet hurt so bad, there were some mornings I could barely walk. Not to mention the brain fog, fatigue, hot flashes, and uncontrollable weight gain. My Gyno told me that you either tolerate it or you don't. I have an appt. with my Oncologist in September and will discuss Evista. I'm only 45 but after a hysterectomy in 2010 and all the chemo and hot flashes I feel post-menopaual lol. It wasn't an easy decision for me to stop taking Tamox but I came to the conclusion that it's quality of life, not quantity. Good luck to you :)

July 12, 2014
A MyBCTeam Member

I'm. 62 postmenapausaual and my susts are going worse everyday. See eats and hot flashers are part of being a woman. My problems are much worse. Severe head pain dizziness confined me to bed cannot work feel like I have the flu sore throat hair loss hoarseness and npow very serious blurry vision. Beginning months were fine now 8 months later I am a mess. Plus risk of uterine cancer too high Mom and her two sisters had it. Trying to get to oncologist ASAP maybe this other drug might work but quality is better than quantityp especially when no one wants to be around you.

July 13, 2014
A MyBCTeam Member

Melissa, I think a lot of our aches, pains, weight gain, hot flushes, night sweats, brain fog, depression etc. is more due to the premature menopause then the Tamoxifen. I'm optimistic that these side effects will lesson over time and they already have for me. I was 43 when I had chemo. I take Gabapentin for my joint pain and that seems to be helping. I am now trying to exercise regularly to lose the extra weight I have gained. I really don't want to throw in the towel just yet. I want to stay positive and try to be healthy and hopefully lose 20 pounds. I have to remember that there are lots of women who are older than me and menopausal who manage to lead healthy lives (and lose weight). I want to now be one of them. Wish me luck!

July 12, 2014
A MyBCTeam Member

From the internet, it appears that Evista is only for post-menopausal women. I am pre-menopausal and therefore was prescribed Tamoxifen. My understanding is that Tamoxifen is the ONLY drug available for pre-menopausal women... I have to say, I am coming to terms with this drug. I have been on Tamoxifen since March (4 months) and my hot flushes have diminished. My only real complaint is night sweats and generally sweating more easily.

July 11, 2014

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