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Old 03-02-2014, 06:24 PM   #1
Jean
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Join Date: Oct 2005
Location: New Jersey
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Taking AI since 2006 and

Hi All,
Like many of you I am taking Femara going on 9th year.
We have heard the expanded time frame from 5yrs. to now 10 years.

My onc was also giving me zometa infusions - on my last visit he said he would halt the zometa and wanted me to see an endocrinologist. I have an appointment - for this month. In the meantime I was curious those of you on the long history of AI over 5 yrs. what has your onc. done with bone health?

I am feeling fine with no severe side effects.
Just a bit concerned that i did not have zometa on my last visit with Onc.

best to all.
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-02-2014, 09:34 PM   #2
suzan w
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Re: Taking AI since 2006 and

How often do you have the zometa infusions? Dosage?
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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 03-02-2014, 09:59 PM   #3
Jean
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Join Date: Oct 2005
Location: New Jersey
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Re: Taking AI since 2006 and

Hi Susan,
Once per year and the infusions would take 15 20 min.
not sure of the dosage.

jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 03-03-2014, 10:13 AM   #4
Becky
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Re: Taking AI since 2006 and

I have been on Arimidex 8.5 years. When I had my ovaries removed, I had my first Dexa scan that showed the beginnings of osteopenia so I started Zometa every 6 months. I also started being very serious about vitamin D. I don't know what my starting level was but since others in my immediate family tested low, I figured I did too. My levels are now above 60 and when that happened, my DEXA scans started reading normal so I don't get the Zometa anymore (my insurance probably wouldn't pay for it anyway since I had a normal reading). My onc thought this was amazing and never saw a woman who was ostenpenic change to normal especially with an ooph and an AI. He said while on an AI a good DEXA result is no change.

However, my mother is on an AI too and has bad osteopenia. She may actually have osteoporesis. She had been on Fosamax prior to bc and does Zometa now. She has been on an AI over 9 years and I have been pleading with her to stop because she broke a rib twice - one time from coughing too hard. She needs to be careful and I think enough is enough with the AI.

My mother also goes to an endocrinologist but she also has low thyroid (prior to bc) and benign adrenal tumors (but they cause a bit of havoc for her due to fluctuating adrenal hormone issues).
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-03-2014, 04:08 PM   #5
tricia keegan
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Re: Taking AI since 2006 and

When my Dexa two years ago showed Osteopenia my Onc suggested a once yearly iv of Zometa which really helped as my last Dexa showed great improvement.
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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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