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Old 09-28-2011, 06:10 PM   #1
CLTann
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Five Year mark for AI inhibitor

Hi Sisters,

This is the time again my onc bringing up the end of Femera regimen. Last year was the end of five years but I talked my way out. So I had another year. Now it is the end of 6 years. He wants to end the Femera now.

Do any of you have the same opinion from your on? I know the standard of care is for 5 years, but many oncs agreed with patients to continue indefinitely. Please give me some suggestion on how do I counter my onc's opinion. He now says that beyond 5 years, the results have shown negatively. Is that true?

Ann
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 09-28-2011, 06:51 PM   #2
Jean
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Re: Five Year mark for AI inhibitor

Hi Ann,
I just had my visit with onc. and he said I will stay on Femara as the results are compelling to stay on.

My onc. does confer with Dr. Slamon - I don't know if this helps?

Best Wishes,
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 09-28-2011, 07:35 PM   #3
Gerri
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Re: Five Year mark for AI inhibitor

Ann,

My onc said basically the same thing as Jean's - the preliminary results are showing that it may be better to stay on an AI longer than 5 years. She said that I should stay on Femara for now and we will reassess at the 7 year mark.

All my best,
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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Old 09-29-2011, 01:26 PM   #4
CLTann
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Re: Five Year mark for AI inhibitor

Jean and Gerri,

Thanks a lot for your useful replies. I will use your info to get my seventh year Femera. I don't quite understand the reason for my onc's position for not continuing the medication. He alleged that the preliminary results for the group continuing on Femera were negative, a total contradiction from what you quoted from your oncs.

Ann
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 09-29-2011, 04:17 PM   #5
Becky
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Re: Five Year mark for AI inhibitor

I am 6+ years on Arimidex and my onc is also awaiting some data for next steps.
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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 09-29-2011, 07:35 PM   #6
caya
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Re: Five Year mark for AI inhibitor

I was on Tamoxifen for 2 1/2 years, now on Femara. My 2 1/2 years will be up next July (2012). My onc. has told me that he wants me off it then, due to my osteoporosis, and the fact that current studies are not showing any really good reason to prolong taking it.

On the one hand, I will be happy to be off it - weight gain, joint pain, insomnia, osteoporosis, to name a few reasons - on the other hand, it's my security blanket and I'm nervous to go off it.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 09-30-2011, 07:58 PM   #7
sassy
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Re: Five Year mark for AI inhibitor

I've been on Arimidex for six years and my onc plans to keep me on indefinately. Says studies are indicating positive results. I did try Femara for about three months six months ago to see if side effects lessened, but could tell no difference.
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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 10-03-2011, 09:51 AM   #8
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Re: Five Year mark for AI inhibitor

I've been on Arimidex for 5 1/2 years and have been told results are showing it might be good to have one month off every 3 months or so as any cancer cells would then be more receptive??
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Old 10-03-2011, 01:18 PM   #9
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Re: Five Year mark for AI inhibitor

I thought studies were showing different results for Her2+. If you are 5 years out and received Herceptin, even if you are ER+, the liklihood that you will recur is close to 0. I see my onc in a month and will ask since I would prefer to go off of it. The side effects of long term estrogen deprivation may outweigh the benefits for Her2+ women if the stats do show a different recurrence pattern for Her2+. If anyone has other information or studies to share that support or contradicts this, please let us know.
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Old 10-03-2011, 03:15 PM   #10
tricia keegan
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Re: Five Year mark for AI inhibitor

I did'nt get to see my onc but did speak to her Jr who said new trials are showing good improvment for seven years on this but did'nt get to ask for details as I was just so pleased to remain on it for another two!!!

Maybe look into the last ASCO conference as there may be something there I missed, I know my onc attends this so she would have got her info there.
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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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Old 10-04-2011, 11:18 AM   #11
Barbara2
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Re: Five Year mark for AI inhibitor

I have been on Arimidex (now Anastrozole) for 8 1/2 years. I see my onc in about a week, but he has said that he will keep me on this; he says the reports on Arimidex beyond 5 years are looking good.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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