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Old 08-16-2011, 04:08 PM   #1
ginnyg898
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Join Date: Sep 2010
Location: Northern California
Posts: 64
Tamoxifen not working; Arimidex/Lupron

My Onc put me on Tamoxifen about 6 weeks ago. I did alot of research (including this site!) about reactions and side effects, of which I had none. So I insisted on a metabolic test to see if it was working; I really dont see the need to be on a med for 5 years if it is doing me no good. Well, today I got the results and I was right; my body doesnt metabolize the Tamoxifen. So my Onc suggested we do Lupron shots each three months and Arimidex. I will have my first dose later this week.

I would love to hear from those of you that have done Lupron and Arimidex; any side effects I should know of? How did you feel while on the drugs? I read about possible joint pain, not a big deal as I have that from Herceptin already anyway
__________________
41 Years Old
Dx w/IDC in August '10
No family history
ER+/PR-/HER2+
2.2cm tumor/Stage 2A
No node involvement
Tested negative for BRCA 1/2
Participated in a UCLA clinical trial testing TCH and/or Lapatinib in stage 1/2/3 bc patients that can be removed by surgery.
Underwent neo-adjuvant therapy to shrink tumor prior to surgery.
1st Surgery date: 2/16/11
Pathology report indicated ADH/DCIS in margin.
2nd Surgery: 3/21/11
Clean margins!
Started radiation: 4/11/11
Completed radiation: 7/8/11
1st post-surgical mammogram: 8/16/11 - CLEAR!
6 Weeks of Tamoxifen - Failure to Respond
Started Lupron/Arimidex: 8/29/11
Herceptin until September '11

Recurrence - August 2018
Same profile - ER+/PR-/HER2+
Undergoing neo-adjuvant therapy prior to surgery;
Gemzar, Carboplatin, Herceptin & Perjeta
Chemo through the end of 2018...
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Old 08-16-2011, 08:40 PM   #2
sassy
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Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: Tamoxifen not working; Arimidex/Lupron

Hey Ginny,

I was dx'd at 45. Onc put me on Lupron shots every three months and Arimidex. After one year had to go to monthly Lupron because my levels kept rising. I took the shots for four years, then had an oopherectomy.

I did have significant joint pain from both Arimidex and Lupron; my GP put me on Lasix which helped a good deal.

After stopping Lupron shots, I do feel more mentally sharp and a little more on the "normal" side physically.

Good luck, and keep the Lasix in mind if you do have joint pain. Not many people have tried this--small study showed promise and it has helped me.

Best Wishes,
__________________
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 08-17-2011, 07:27 PM   #3
1rarebird
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Join Date: Feb 2010
Location: TN
Posts: 175
Re: Tamoxifen not working; Arimidex/Lupron

Ginny---What was the name of the metabolic test that you had preformed and which determined you were not metabolizing Tamoxifen? Was it the test for the CPY2D6 enzyme? I had that done but before starting Tamo. Thanks--bird
__________________
Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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