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What problems have you had with Tamoxifen?

Breast Cancer | Last Active: Jan 25, 2023 | Replies (67)

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@texasduchess

In mid-2000, I was diagnosed with an estrogen-positive breast cancer. I had a lumpectomy for a very small tumor, chemotherapy (my oncologist recommended because I was "young"—only 45 and he thought it would be in my best interest) and in 2001, started Tamoxifen and 6.5 weeks of radiation. About 10 weeks into taking Tamoxifen, I started having minute-to-minute, intense sensations of freezing, then burning up—the Tamoxifen was doing its job and binding to the estrogen in my system and putting me into a chemically induced menopause. I was put on 25mg, regular-release Effexor (venlafaxine) to control these "hot flashes."

In late March 2004, I woke up on a Sunday thinking I had a "charlie horse" in my right calf. Nothing eased it and by Wednesday noon, I was at my regular doctor's for muscle relaxers. He knew I was on Tamoxifen and even though my leg was NOT red, NOT hot, NOT swollen, he sent me to the local hospital for a sonagram. Within minutes of the test, I was whisked to the ER and was given several shots of Lovenox (a blood-thinner) and admitted. I spent 8.5 days in the hospital, getting Lovenox shots twice a day as well as oral warfarin (another blood thinner). ). I was on warfarin for a year and had blood taken weekly to monitor and adjust the dose.

While there, they discovered that I had anemia—I had been having HEAVY periods for several months with little, or no pause between. I had a vaginal exam and some uterine biopsies taken. I had developed uterine cancer and needed a hysterectomy. Fortunately, all cancer was contained within the uterus.

Both the leg blood clot and uterine cancer were attributed to my Tamoxifen use. As soon as I was admitted to the hospital for the DVT, my oncologist took me off Tamoxifen.

Sometime after the hysterectomy, I was put on Aromasin (after all, I was now post-menopausal). I stayed on that for another 5 years until my oncologist said no further benefit would come from taking it any longer. The only real problem I had on Aromasin was that from the VERY FIRST dose, I would "urp, urp, urp" all night long after going to bed—no acid reflux, or burning in the throat, just "urp." Careful reading of the teeny print on the multi-page drug info sheet that came with the Aromasin did show “dyspepsia” as a possible side effect. That side effect went away about three months after discontinuing Aromasin.

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Replies to "In mid-2000, I was diagnosed with an estrogen-positive breast cancer. I had a lumpectomy for a..."

YIKES! I don't think I have enough years left to go through that!

I asked my oncologist about tamoxifen instead of an aromatase inhibitor and he essentially said "Nope." Due to the DVT and cancer risks. I'm sure there are times when he has to prescribe it as the only option but he thinks it has a lot of issues.