Stopping Tamoxifen
I swore I would manage this but recently figured out that all these health problems are actually side effects from tamoxifen. it started out manageable. horrific nausea but weed fixed that. hot flashes were annoying but occasional and did not last long. then i started getting severe stomach pains that confined me to bed and the inability to swallow or poop. i was down to less than 100 pounds and almost died. i sweat so much at night that my bed is sopping wet. and they come with hot flashes that last sometimes an hour where i get so tachicardic i cant even count it. my left arm goes numb and my vision gets weird and i get real faint and dizzy. i get up to pee and pass out cold. i almost broke my neckl with the last fall. have stitches on my face! i also got that rusty discharge and they had to check me for endometrial cancer. there is more… if you loook at the list i have every single one of those side effects and way more severe than most other people. I have been confined to bed for most of the last two years.
Has anyone experienced it this bad? I really have no choice but to stop it. It has been 3 weeks since I stopped it and it appears the side effects are no longer so dangerous. i can't wait till the go away. since i just moved i need to sign up wih a new oncologist. very inconvenient time to be without one…
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Dear lady, you are going through exactly what I feared might happen to me if I took Tamoxifen or Anastrozole. At my age of 83, after my successful lumpectomy with clean margins, I agonized about whether to have additional treatment. I did tons of research. I meditated and prayed. In my gut, in my very being, I felt I'd be at high risk of losing "quality of life" for my remaining years, if I took either of those drugs. I declined.
Sometimes I wonder if that was the right choice, but I'm mostly comfortable living with the slight risk of recurrence that I'm facing. I just had my 6-month post-surgery mammogram and ultrasound, and it's all clear.
I don't know the details of your surgery/treatment situation, so your "story" might be very different from mine. I empathize with your misery! I hope others will reply to your post, ones who have taken Tamoxifen or are now taking it. Best wishes, take care!
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i_am_a_parrot
See if you can get Dr. Sam Mazj for your new oncologist? He's wonderful, and he LISTENS and actually considers my viewpoint.
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Oh! Thank you for the recommendation. I evacuated to Ohio during the Dixie Fire and ended up getting an oncologist there, so I need to find one here now that I am back home for good. So your recommendation is well received.
It has been a month since I stopped the Tamoxifen and I finally feel like I am getting my life back. It made me fat though - I gained 50 pounds in less than a year. I have never struggled with dieting but after three months of dieting I had actually gained weight. Maybe now that I am not taking the drug anymore I will be able to lose it. But it makes me feel like the saga and hard work are still not done. Plus I keep getting these weird bruises all over my arms and that is still happening. My PCP is pushing to get me to an oncologist but I haven't yet because I have so many medical issues going on all at the same time and I only have so much energy in a day… but I am looking forward to this doc because it sounds like he will take the time to explain how and why the side effects for me were so much worse than what is listed on the drug information sheet. And whether I will have ongoing issues
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