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Diet and Nutrition By popular demand our nutritional message board. This board will be monitored by a Registered RD who is certified in oncology by the American Dietetic Association

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Old 02-12-2016, 02:09 PM   #1
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Join Date: Nov 2009
Location: western ma
Posts: 280
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!
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 02-29-2016, 09:49 PM   #2
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,804
Re: going off tamoxifen


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


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.

Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 02-29-2016 at 09:51 PM..
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Old 03-01-2016, 08:46 AM   #3
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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.
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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