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Old 01-22-2015, 03:43 PM   #1
kimsmo
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Join Date: Dec 2013
Posts: 17
Tamoxifen Issues

I've been on Tamoxifen for just over a year, and I've had a ton of side effects. In fact, there were multiple blood tests, a bone scan, and a liver ultrasound to try to get to the bottom of my issues (joint/muscle/bone pain, fatigue, foggy brain, constant headache). Everything was normal except a slightly elevated Alk Phos. And I've been doing all the right things (extremely healthy diet, exercise, etc.). So my oncologist asked me to stop taking Tamoxifen for two weeks to see if my symptoms ease. Sure enough, within a couple of days, I was feeling like my old pre-cancer self - extremely energetic, pain free, and very happy. I can't fathom going back on that drug which made me feel like an ill 80-year-old. (I'm turning 50 in a couple of months.) I'm hoping my oncologist has some good alternatives for me next week when he calls to check on my symptoms without Tamoxifen. Anyone else been through this?
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December 28, 2012: Dx Invasive Ductal Carcinoma, ER+, PR-, HER2+++
January 23, 2013: Bilateral mastectomy with reconstruction. 3.5 cm tumor. Surprise 2nd tumor found as well. Sentinal lymph node biopsy clear (which is good). Margins not clear, so will have to have radiation.
February 27 - May 1, 2013: Four rounds of AC
May 22 - July 22: Weekly Taxol, Herceptin every three weeks. Taxol discontinued a few weeks early due to neuropathy. Herceptin will continue every three weeks through May 2014.
August 26 - October 3: Six weeks of daily radiation.
September 4, 2013: Hair, eyelashes and eyebrows start growing back!
October 14, 2013: Returned to full-time work, and started Tamoxifen the same week.
November 19, 2013: Expanders out, implants planted - so much more comfortable! Returned to work two days later! (crazy)
Herceptin is causing poor Muga results (left ventrical function decreased from 78% to 53%). Echocardiogram good, though, so we're continuing with Herceptin and regular echocardiograms.
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