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-   -   going off tamoxifen (https://her2support.org/vbulletin/showthread.php?t=64524)

v-ness 02-12-2016 02:09 PM

going off tamoxifen
 
hi - i have continued on tamoxifen even though my five years were up last april because my boyfriend was diagnosed with stage 4 cancer. i wanted any anti-cancer ammo i could get in my corner for myself because i strongly believe in stress = cancer. in may 2014 i came home from italy and got a clot in my leg from the flight and tamoxifen and i have been on coumadin ever since, with difficult regulating. i think if i went off tamoxifen, i would get to come off that too. i don't know how much good tamoxifen is doing me anyway, i had a total hysterectomy in august 2010 and am obviously post-menopausal (i couldn't take any of the AI's, bad reactions). have any of you gone off tamoxifen and lost weight? i used to have the best metabolism and i also exercise, but now i am getting yet another tamoxifen SE - water retention in my legs. i would rather try to prevent a recurrence in other ways at this point. de-stress by working out, various supplements like D and turmeric, etc. thank you!

Jackie07 02-29-2016 09:49 PM

Re: going off tamoxifen
 
Valerie,

Indeed, stress can make everything in life [feel] so much worse。

Below is the abstract of a recent study. I've highlighted the part talking about the extended use of Tamoxifen.

Breast Care (Basel). 2015 Oct;10(5):312-5. doi: 10.1159/000439462. Epub 2015 Sep 11.
The Modern Landscape of Endocrine Therapy for Premenopausal Women with Breast Cancer.
Rossi L1, Pagani O1.
Author information

Abstract

The optimal endocrine therapy for premenopausal women with early and advanced breast cancer still remains an important and controversial issue. For over 30 years, tamoxifen has been the gold standard in the adjuvant setting. New therapeutic options, such as the addition of ovarian function suppression to oral endocrine therapy (either tamoxifen or aromatase inhibitors), can improve outcomes over tamoxifen alone in well-selected patients. Treatment duration has also been revisited, and extended therapy is becoming a new standard of care, especially in high-risk patients. Endocrine therapy for advanced disease still represents a challenge and a research priority. New drugs and combinations able to overcome endocrine resistance are at the horizon, and their role in premenopausal women should be better elucidated. Side effects and quality of life (including family planning considerations) play an important role in treatment selection and in the patients' treatment adherence and should always be discussed before start of treatment. The paper will specifically focus on how to integrate all new treatment options in the current armamentarium of endocrine therapy of premenopausal women, with the aim of best fine-tuning treatment selections according to the individual risk/benefit evaluation.

snolan 03-01-2016 08:46 AM

Re: going off tamoxifen
 
I just stopped my tamoxifen last week after 5 yrs. I was getting water retention too. And have had a steady wt gain over the years. I haven't seen any changes yet but realize it will take a while to get it out of my system. I wasn't supposed to stop taking it until my next visit with my Dr in May but figured what was two months, and I can report any changes when I do go to my appt. My Dr was leaving it up to me if I wanted to stop or cont with the now recommended 10 yr treatment. Since I was Stage I I feel comfortable in stopping it as does my Dr.


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