Tamoxifen Reoccurrence Prevention
I didn't see anything recent in the Bottle of Tamoxifen discussion so I came here to vent and ask for feedback.
My bottle's still at the pharmacy and, after reading the PDF that the oncologist's office helpfully provided, I'm inclined to leave it there. Besides the handling instructions which makes tamoxifen sound as toxic as doxirubicin, I'm leery of many of the side effects:
- joint pain: I stopped letrozole a few months back because of The. Worst. Joint. Pain. Ever. (Unique feeling that both hip joints were about to implode/collapse…) I told the oncologist that, as a solo caregiver, I had to discontinue it because it was a safety issue.
- weight gain: working with a wellness program, I just lost 10 pounds over the past four months, looking to do more. Tamoxifen could erase that progress and make it that much harder.
- high cholesterol: Tamoxifen could push my numbers back up.
- blood clots: my sister died of one, but she was bedridden.,,,
- increased stroke risk: um, solo caregiver here…
And on top of that, the oncologist thinks it's okay for me to take the capsule even though the pharmacy flagged it because of my corn allergy.
I'm really feeling I can't afford to do this even though my last tumor protein labs were higher than the previous. When she saw that, my naturopath told me to stop CDG EstroDIM and go with the tamoxifen. (LOL the oncologist had a fit when he realized that was all I was taking even though in April he'd said it was okay. I guess he assumed I was taking it in addition to the exemestane.)
But I wonder what the guidelines say when aromatase inhibitors and tamoxifen aren't doable. I had stage II HER2- E+ IDC. I was hoping to find something useful in the Cancer Unraveled docuseries but haven't found anything really new; although I did get new insight into how cortisol kinda softens the body up for tumors to thrive.
So, please, any one - what conversation did you have with your oncologist? Mine isn't the kind to go into 'little' details; he's a strictly-by-the-guideline guy. I see the National Cancer Institute has many articles on how well tamoxifen reduces recurrence at five and 10 years. Don't see anything on how to survive its side effects…
Comments
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Hi @ravensdottir, we're sorry for the concerns that have been worrying you regarding Tamoxifen treatment. Since you do have valid personal health history concerns regarding Tamoxifen, and you did not tolerate aromatase inhibitors well, ask your oncologist whether you may be a good candidate for a clinical trial with one of the newer-generation oral SERD hormone blockers, such as Giredestrant. The newer oral SERDs have reportedly been associated with less side effects than either Tamoxifen or aromatase inhibitors.
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@ravensdottir In my case, I took anastrozole for around 4 months before surgery (postponed due to the pandemic in 2020) to prevent tumor growth and hopefully shrink the tumors; however I had terrible side effects and there was no real response by the tumors to the meds. Because my recurrence/mets risk was assessed at 3% with the meds vs. 6% without, I opted not to take them after surgery (June 2020, DMX with immediate DIEP flap recon). I was 62 at the time, but if I'd been 10, may even 5 years younger and/or my recurrence risk was greater I'd probably have tried some of the other hormone blockers, although all of them seem to be pretty toxic and recurrence/mets can still occur even if one takes them.
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