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Old 02-12-2016, 02:11 PM   #1
v-ness
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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 02-14-2016, 04:13 PM   #2
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 2,002
Re: going off tamoxifen

I stopped Tamoxifen after I had my 5 years in the bag. My onc told me they were now recommending 10 years, but the benefit was so small and the side effects so miserable I just thought, "nuts to that! I'm done!" She was fine with my decision.

I feel loads better now. I sleep better and my joints, especially my knees, are like they were pre-cancer 8 years ago! My weight has not benefited unfortunately, but I am post-menopausal now and eat too much for my new metabolism.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 02-14-2016, 05:34 PM   #3
europa
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Posts: 360
Re: going off tamoxifen

I was on Tamoxifen for 3.5 years. I developed every single side effect. I had uterine polyps that would hemorrhage and sent me to the hospital for emergency surgery four times last year. And then a month after my last surgery I developed a blood clot. So my docs all agreed that since my ER was so low in my tumor that the benefit certainly did not out weigh the risks. They attempted Zoladex to then be put on Arimidex but I had a horrific reaction to shutting my ovaries down. So I'm now on nothing except Metformin because I'm on a trial. I feel a heck of a lot better. I am so happy I'm off of it. Instead I have embarked on a lifestyle change to reduce unnecessary estrogen abortion.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 02-15-2016, 06:18 AM   #4
jra40
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Posts: 260
Re: going off tamoxifen

I too was on Tamoxifen up until August 2015 and suffered dreadful side effects so I choose to have a full hysterectomy and move to Arimidex. Fast forward to now where I have a blocked duct in my good breast and was suffering from terrible physical pain since August - found out it is all from Arimidex! Took myself off of it and feel 10x's better! I gained 40lbs after from treatment and could not lose any weight. I am now 8lbs down from stopping Arimidex and Tamoxifen, not sure if there is a correlation but I believe they do cause part of the problem with weight.

I'm not getting back on any drug, I refuse to live in pain so I am now focusing on a healthy diet and cutting back on sugar, red meat, and acid causing food/beverages. Time to take my life back from Cancer!!
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 02-15-2016, 10:48 AM   #5
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: going off tamoxifen

I am coming up to my 5 yr mark this May, my Dr has been on the ropes as if I need to continue since I was Stage 1. She wants me to make the decision. I want to come off of it, I feel my weight gain is from it, I don't have any other side effects from it. But I feel comfortable stopping it.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
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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Old 02-17-2016, 12:09 PM   #6
v-ness
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Join Date: Nov 2009
Location: western ma
Posts: 280
Re: going off tamoxifen

thank you for your responses! i appreciate it. i left a message for my onco on friday but i still haven't heard back, but i still quit taking it on friday. i'm just waiting to hear if i can now quit coumadin, or when i can quit it. she felt the blood clot in my leg after the flight and trains from italy were both flight and tamoxifen related. i cannot take AI's, i had bad reactions to all of them. i just realized that my hot flashes have already decreased dramatically even when it is no longer -10 degrees out, so i am THRILLED. i was originally having more than 40 a day when i first started this rollercoaster. haven't dropped an ounce, but maybe i will.... i work out hard several days a week. thanks again. v
__________________
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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