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Old 08-11-2009, 09:44 PM   #1
sassy
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stop the lupron--out with the ovaries

I have been on Lupron for almost 4 years for ovarian suppression, allowing me to take an AI, and hopefully gaining some benefit in regard to recurrance.

I recently contacted my former onc who designed my treatment to ask his opinion on this issue. He told me he felt that at this point I should have gotten all of the benefit possible from Lupron and that I could stop the Lupron as long as I had my ovaries removed.

I will talk with my current onc and surgeon concerning the Oophorectomy. I am hoping that going off Lupron will help with the round face and even rounder belly that I have developed!

Any thoughts or experience with Oophorectomy would be greatly appreciated.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 08-11-2009, 10:58 PM   #2
mimiflower07
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Re: stop the lupron--out with the ovaries

hi Rhonda,
just to let you know having my ovaries out was the easy part in all this. My girlfriend stayed with me directly after and even slept with me. What every girl needs is a good friend. I really noticed that about 4 mths later my mood was all over the chart...psycho mama!! It will be a yr in Oct and i feel myself again. Just my normal cranky.
Some new research out relating an increase in lung ca when ovaries are removed. something that may matter or not since chemical shut down has same effect.
suzanne
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dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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Old 08-12-2009, 07:30 AM   #3
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Re: stop the lupron--out with the ovaries

I had em out same day as my bilateral mast. Having had major abdominal surgery before, and this one being done laparascopically, it was a BREEZE. I did see the recent info saying that women who had ovaries removed may have a higher risk of dying, but I think it was a small study, and not based on people who already had breast cancer.

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Old 08-12-2009, 07:36 AM   #4
suzan w
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Re: stop the lupron--out with the ovaries

my ovaries, and tubes are coming out on Monday...prophylactically, as a result of the BRAC2 test, which came back positive! OUT with OVARIES!!! xo Suzan
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 08-12-2009, 09:08 AM   #5
mimiflower07
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Re: stop the lupron--out with the ovaries

susan
good luck...you'll do great
suzanne
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suzannne
dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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Old 08-12-2009, 12:51 PM   #6
Chelee
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Re: stop the lupron--out with the ovaries

Sassy, I had an ooph and as far as surgeries go it's a piece of cake. Very little discomfort...the second day after having it I felt pretty much normal...no problems at all. Day three I was out and about feeling fine.

However I am an unusal case but just wanted to put this out there...after your ooph make sure your onc checks your FSH and Estradiol levels. Mine never dropped after my ooph...it took 1 yr and 7 months after my ooph. (But this is NOT the norm...I always have to be different!) But I'd hate to see you taking an AI and find out your still in the peri-meno range like I was.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-12-2009, 05:16 PM   #7
tricia keegan
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Re: stop the lupron--out with the ovaries

Sassey, it was the easiest surgery I ever had and I've been fortunate with very few ummangeable side effects.
I had some hot flashes frequently for two months or so but overall I have no regrets and the side effects became easier as time went on.
good luck with your decision
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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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