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Old 10-27-2014, 10:55 AM   #1
duga35
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Join Date: Jan 2008
Posts: 154
10 years of Tamoxifen?

Hello everyone, it's been awhile since I last checked in, hope everyone is doing well!

What do you think about the new reports that now say 10 years of tamoxifen is better than 5? When I first started taking it I had weight gain, my onc said that I was crazy and that it doesn't cause weight gain. Well, I hit my 5 year mark and stopped taking it, the weight starting coming off and I lost over 50 pounds within a year. I went back for my yearly and he suggested I go back on it because of the report. I didn't want to at first because of the weight gain, but then I thought maybe I should, so I did. Yep, I started gaining again after taking it for only 30 days so I stopped it again.

Thoughts?
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Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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Old 10-27-2014, 12:26 PM   #2
snolan
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Re: 10 years of Tamoxifen?

I'm approaching my 5 yr mark soon, my onc also wants me to cont for the 10 yrs. I haven't had much wt gain maybe 5 lbs. I read the study and the decrease in reoccurrence from taking it longer was 2-3% and wasn't seen until the 9 yr mark. I guess it depends if that % is significant enough for you to want to take it. Since it doesn't bother me I plan on taking it for the 10 yrs.
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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 10-29-2014, 01:32 PM   #3
Lien
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Re: 10 years of Tamoxifen?

Weight gain would probably put you at risk for other diseases, and it seems the weight gain was certainly connected to taking Tamoxifen in your case. If the risk reduction is only a couple percent points, I would rather stay slender and be monitored regularly for recurrence. It is a difficult choice, but we do what we can and there are no guarantees that you will remain cancer free while taking Tamoxifen. You will just improve your odds.

I guess the bottom line is: could you live with your decision if you have a recurrence further down the line? Or would you blame yourself and feel miserable about it? Do you need more data on the risks of weight gain to help you make your decision?

I took hormonal therapy even though my doc didn't specifically recommend it at the time (he would now, he said) because my children were aged 3, 8, 12 and 16 at the time. I did not want to leave them behind without a mother. I wanted to accept any and every side effect if that could improve my chances of being there for my kids until they left home. My youngest is 14 now, and I would still do everything to see him through high school. But after that? I am not so sure.

Just my two cents

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 11-17-2014, 08:19 AM   #4
v-ness
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Re: 10 years of Tamoxifen?

my onco is leaning toward keeping me on tamoxifen for 10 yrs. i went on blood thinners in june because i got a blood clot in my leg on long trains and planes home from italy. so i have to be on coumadin for as long as i am on tamoxifen now. the idea of both for 10 years is a little daunting. but since my only SE is hot flashes, and i've had 5 yrs of those now, what the hell, might as well. i should actually be on AIs since i am 54 and post-menopausal, but i was not AI friendly, terrible side effects from every one. apparently, given the blood clot, i am not terribly tamoxifen friendly either!

my theory about weight gain is this: yes, being overweight contributes to breast cancer and yes, tamoxifen can make you gain weight. so what to do? get your ass to a gym or outside and workout. it does double-duty in making you feel better, lose weight, and decreases the chance of recurrence. a lot of people will say they're too tired to exercise, but it seems to me that the alternative really sucks. and when you get yourself going, you actually pick up more energy and it evolves into a happier, healthier you. so if treatment makes you fat, flip it into something good all round.
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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 12-03-2014, 04:32 PM   #5
tricia keegan
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Re: 10 years of Tamoxifen?

I took Arimidex for eight years and had no weight gain, quit smoking and gained a lot, I'll be trying to lose it in the new year but prefer weight gain to a cancer recurrance so I would continue on it.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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