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02-08-2012, 08:54 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 476
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Time to check what the latest advices on post 5 year Arimidex, Femara or other simila
From time to time, we would like to know the current thinking among treating doctors on the discontinuance of AI inhibitors. What is your doctor's opinion?
Your answers are appreciated.
__________________
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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02-08-2012, 09:16 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
Hi Ann,
When I visited my dr. in Oct. we discussed my AI treatment routine (I am taking Femara) since I am doing well on it as far as not experiencing joint pain, headaches or hot flashes, and bone health has remained steady. He wanted me to continue taking Femara well past the 5yrs time line we first discussed yrs. ago. At present I have been on AI for 6.5 yrs. I would like to add that I am highly ER+ positive (90%). I am experiencing my once thick full bodied hair is baby fine and thin. I will most likely continue on Femara for another 3 yrs.
Best Wishes,
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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02-08-2012, 09:19 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
My onc stills feels I will be on AI most likely the rest of my life. He told me this from day one and and I'm at 6 1/2 years now. 6 years on Arimidex, tried Femara which had more significant side effects, experimenting with exemestane the last four months. Jury is still out on the exemestane, but I have had significant hip issues, so will probably return to Arimidex.
__________________
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.......
14 YEARS NED!
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02-09-2012, 05:25 AM
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#4
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
I was on Tamoxifen for two years (when I was diagnosed at 53 I was still not through menopause) and have been on Femara for four years. Although my oncologist has been leaning towards taking me off at this point I talked to Eric Winer in San Antonio and he said if I was his patient he would keep me on Femara for one more year and then call it a day. Another doctor from Dana Farber told me that he would have me on Femara for 4-6 years, following the T. I had.
Best wishes,
karen z
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02-09-2012, 05:56 PM
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#5
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
My onc. is presently leaning on calling it a day at 5 years of the Femara. I have another year and half to go until I have reached that mark. Generally I have been tolerating it well, but my onc. felt my chances for recurrence were low and the risk to bone health is great. We will see in the next 1.5yrs if she has any new data. My guess is I will complete it and at least take a year off before attempting any additional time should she advise me to continue.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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02-09-2012, 08:32 PM
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#6
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
I saw a new onc on Tuesday and we had this discussion. I was on Tamoxifen for 2 yrs and when I went into menopause switched to Femara - I have been on that for almost 4 yrs now. His concern is that I still have osteopenia even though I have been getting Zometa 2 x yr for the past few yrs. He is going to look for current research that supports continuing an AI past 5 yrs (the 2 yrs of Tamoxifen count). He has asked me to call him in one week to see what he has decided. He wants to make sure that the benefit (for me) outweighs the risk. I will let you know if I find out anything interesting.
__________________
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. - Robert Brault
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02-09-2012, 08:41 PM
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#7
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
Interesting discussion.
I was on Tamoxifen for 2 1/2 years, then switched to Femara. This July, 2012 will mark 2 1/2 years on the Femara, for a total of 5 years. The original plan was to go off Femara in July, but my onc. wants to revisit the issue then. Just had an Aclasta (Reclast in the US) infusion due to osteoporosis - my endocronologist says he thinks I should stay on Femara for another 2 1/2 years (for a total of 5 years on the Femara) - says he can control my bones.
One part of me would like to finish in July, the se's are def. impacting my QOL. On the other hand I was highly ER+, and I don't want to lose my security blanket.
Looking forward to lots of imput from everyone.
all the best
caya
__________________
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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02-10-2012, 10:43 AM
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#8
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
Well, I just got a call from my new onc. He consulted with my surgeon and they both agreed that I do not need to take Femara any longer. However, he said given my risk of recurrence and my bone health they decided that I should start taking EVISTA (like Tamoxifen it builds bones).
After doing a little online research I found a lot of studies regarding EVISTA and bc prevention in high risk women and men. So it looks like I will be taking this drug more for my bone health rather than preventing recurrence. Who knows, maybe future studies will show that it helps in both cases.
__________________
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. - Robert Brault
Last edited by Gerri; 02-10-2012 at 12:15 PM..
Reason: added
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02-10-2012, 02:12 PM
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#9
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
I went off at 5 years. I was miserable on Femara and looked forward to going off, so if my onc was leaning toward extended Femara, he didn't discuss it with me.
My friend who had a similar diagnosis and the same onc also went off at 5 years. I think if strong evidence comes along for extending beyond 5 years, he'll at least suggest that I go back on. I see him in May. We'll see.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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02-10-2012, 03:24 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
I was on Tamoxifen for 6 months and then had my ovaries removed and I have been on Arimidex almost 6.5 years now. I saw my onc in January and I am staying on. He says for now, it is more for prevention (of a new breast cancer since I still have my breasts) than for recurrence (since my original cancer was 50% ER+ and PR negative).
__________________
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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02-10-2012, 03:34 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
Hi Ann,
My Onc said there was a study showing some benefit up to seven years (although I forgot to ask for the link) and although I was dx with osteopenia this year she was happy when I agreed to remain on arimdex as I was highly triple positive so prefer to deal with bone loss than recurrance!!
__________________
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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03-04-2012, 05:25 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
Last edited by chrislmelb; 03-04-2012 at 05:28 AM..
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03-07-2012, 03:04 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 476
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Re: Time to check what the latest advices on post 5 year Arimidex, Femara or other si
The last reply cites the study reported at Sea Island, GA is an excellent review. What I can interpret is that AI inhibitor beyond five years help younger women as well as those with risk potentials such as non menstrul women. I would include those who may have symptoms of pre-cancerous disorders such as pappiloma. If there had been no problem, five years should be fine.
__________________
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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