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10-04-2010, 03:28 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 476
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Five Year Femera is up
I was hoping my onc will allow me to continue on with Femara after the completion of 5 years. But he says that he just can't do that, without any data to support the continuation. He follows the rule and doesn't want to get into trouble. So, my security blanket is being taken away from me. Anyone here is facing the same situation?
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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10-05-2010, 11:04 AM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Five Year Femera is up
I posted some information about foods that are aromatase inhibitors in the nutrition section awhile back.
Perhaps you can get some ideas from that.
Otherwise I wonder what your ob/gyn, primary care doctor or an endocrinologist would advise you to do?
Perhaps you can talk to one of those people if you are not comfortable stopping aromatase inhibitors.
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10-05-2010, 03:36 PM
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#3
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Five Year Femera is up
My situation is not exactly the same as yours but similar. I had two years of Tamoxifen and will have had three years of Femara by Feb. 2011, for a total of 5 years of hormonal therapy. At my last visit, I asked my oncologist how he was thinking about things and I know he wants me on Femara for at least two more years. There is debate "out there" on this topic and he would prefer to be more cautious. You can always get a second or third opinion, given that this issue may be less clear cut for others than it is for your oncologist.
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10-05-2010, 04:22 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Five Year Femera is up
My onc was on vacation so I saw another Dr who agreed with the studies to keep me on arimidex next year.
I'm hoping this will be the case but wont know until I see her in Dec, must admit I 'd hate to stop it now while still cancer free.
Maybe look up the trials/studies done on this and show them to your onc??
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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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10-07-2010, 03:19 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: Five Year Femera is up
I have been on Arimidex for 7 1/2 years. My onc decided to keep me on it past 5 years. He said there are trials (?) now of using anti-hormonals 10 years instead of 5, so he just opted to keep it going. We didn't discuss it much because the pros/cons are not known. I was afraid to not take it, so I was happy with the decision.
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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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10-07-2010, 04:19 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Five Year Femera is up
I just finished 5 yrs of Arimidex in September and I am continuing on it. My onc says there are trials out there that will finish up within 18 months. He says that if there is no difference between 5 yrs and extended AI, then we will stop then, otherwise, I will continue to 10 yrs. He was cautious since I was younger when diagnosed however, I tell my mom all the hormonal stuff (she had bc that was only highly hormone positive) so when her 5 yrs were up, she told her oncologist she wanted to stay on until I told her to stop She knows I will tell her the trial results and if 5 yrs is enough for her or not (she is 6 months behind me in diagnosis but started Arimidex about 6 months before me as she only need a lumpectomy and radiation - no chemo.
__________________
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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10-07-2010, 06:50 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: Five Year Femera is up
I have a friend here on Femara in a clinical trial - I think her 10 years will be up next year. My onc. said the same thing - I have a little over 2 years left on Femara (5 year total - 2 1/2 years Tamoxifen, 2 1/2 years Femara). By the time my 5 years is up, the results from the 10 year trials should be in.
On the one hand, I would love to stop taking it, on the other hand, it's kind a security blanket issue, especially because I was so highly hormone +.
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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10-07-2010, 07:06 PM
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#8
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Five Year Femera is up
Ann,
I think you have enough info already to see that many of us are continuing on. I would not hesitate to seek another opinion. "Getting in trouble" does not strike me as a good reason for not at least discussing options with a patient. Did your oncologist mention research or ongoing debates? If not, you might discuss with him.
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10-24-2010, 09:16 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 476
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Re: Five Year Femera is up
I sent all of your comments to my onc and he changed his mind. I will continue on Femara indefinitely. Thanks for the inputs.
ann
__________________
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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10-24-2010, 09:27 PM
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#10
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Guest
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Re: Five Year Femera is up
My oncologist had me do 5 years of Tomoxifen and 5 years of Femara. He said they were different enough to be separately effective. I am a 12-year survivor so never had the benefit of Herceptin since it was not available to me in 1998 but I did have 4 Taxols in addition to 4 A/C's which was aggressive for the time since they weren't even routinely doing tests for HER2 at that time.
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10-25-2010, 04:37 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Five Year Femera is up
interesting so have the trials shown that staying on AIs over 5 years is beneficial?
Also I thought there was something about balancing Herceptin and AIs or there was a problem???
Is there any new news on any of this?
would be very interested to know.
Do our insurance companies continue to pay for this extended use?
I just stopped both after 6 years, my onc thought that was enough.
health and happiness
sarah
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10-25-2010, 06:24 AM
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#12
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Five Year Femera is up
I'm ER- but last year I heard a talk by Dr. Larry Norton, a prominent bc onc at Sloan-Kettering Cancer Center, and he said "I look for excuses" to keep women on these drugs.
If you feel strongly about, check into switching to an onc who would keep you on these types of drugs. That would probably entail changing facilities.
Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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