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Old 05-17-2016, 06:09 AM   #1
PMK
Member
 
Join Date: Dec 2015
Posts: 11
tamoxifen side effects?

Hi
I decided after a month of uncertainty to add tamoxifen to my herceptin/perjeta. For those of you who are taking tamoxifen, I'm looking for input for potential side effects so I am prepared. Thank you in advance.
Patrice
Hello,
I have been on Herceptin/ Perjeta (only) for 3 months. I was wondering if anyone else has only been on these antibodies dx with stage IV, and what the results were. Or, how long did it last. I am not happy with waiting for things to progress before adding something. I feel like I should be doing more.
Dx Stage IV Her +, April 2015 with collapsed lung-mets to lung, liver, questionable bone, and some nodes
Chest tube placed to relieve 5 liters of fluid in right lung
1 round of cyclophosphamide/doxorubicin until tumor biopsy confirmed Her2+
May 2015-began taxol/herceptin/perjeta
chest tube removed
3 lung taps to remove continued fluid problem and shortness of breath
September 2015- plural tube placed in lung
Continued with taxol/herceptin/perjeta
Scans slowly improved
December 2015-discontinue Taxol due to increased neuropathy in feet and hands
February 2016-plorax drain removed, fluid issue resolved. Bottom of right lung remains collapsed, but feels ok.
Continuing on herceptin/perjeta
(lost 5 year old daughter to neuroblastoma in 2011 after a 2.5 year battle)
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Old 05-17-2016, 07:18 AM   #2
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: tamoxifen side effects?

I just finished my 5 years on tamoxifen, I didn't have any side effects. I know some have complained of joint pain.
__________________
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 05-17-2016, 08:53 PM   #3
Pamelamary
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
Re: tamoxifen side effects?

Hi Patrice,
I have been stable on Herceptin and tamoxifen for a long time now. The Tamoxifen doesn't worry me too much - if you discount the fact that I am having the world's longest menopause! Hot flushes and disturbed sleep, but otherwise OK.
Best wishes.... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 05-18-2016, 06:48 AM   #4
europa
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Posts: 362
Re: tamoxifen side effects?

Hi Patrice,
I was on Tamoxifen for just 3.5 years. The last year was harsh. I developed uterine polyps and then they would in turn create uncontrollable hemorrhaging which resulted in 4 emergency surgeries to stop the bleeding in a year. And then I developed a blood clot in my leg. All were associated with Tamoxifen. Turns out I developed ALL the side effects expected with Tamoxifen in addition to the most rare side effects. I also developed vaginal atrophy which is so rare as a side effect I think they don't even document how many women develop it. All and all I hated being on Tamoxifen but it's an incredible drug and tolerated by the majority of women. Just take note of side effects and decide if you can live with them. Most likely you won't notice a thing.
__________________
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 05-28-2016, 12:41 PM   #5
v-ness
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Join Date: Nov 2009
Location: western ma
Posts: 280
Re: tamoxifen side effects?

i was on tamoxifen for 6 yrs and had extreme hot flashes and joint pain. i am happy to report for those looking forward to the end of tamoxifen that, in my case, the joint pain lifted as if a miracle. i can squat and get up now, do exercises like squats and lunges, you name it, and i feel like i'm 40 again (i'm 56). the hot flashes have receded in a major way, too. good luck with tamoxifen and i hope you have few to no SEs. 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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