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Old 01-25-2010, 10:21 AM   #1
CLTann
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Any info on A.I.inhibitor after 5 years?

My 5 year Femara is coming to the end soon. Are there any new instructions or opinions on what I need to do? On the one hand, I don't have to put up with minor joint discomfort anymore. On the other hand, I feel that I am losing a reliable support. There must be quite a few patients in a similar situation like I. How are you coping with this?
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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 01-25-2010, 03:37 PM   #2
Laurel
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Re: Any info on A.I.inhibitor after 5 years?

Ann,

I know there are studies pending, but no definitive recommendations as yet that I know of. I suppose you could consider DIM and Calcium D-glucarate. I think you are lucky to be nearing the end, frankly! Hurrah for you!!!!!

Have you read Suzanne Summers new book? She discusses balancing hormones. There are docs listed in the reference section for each state. Do your homework is all I can say. Good luck!
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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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Old 01-25-2010, 06:06 PM   #3
Becky
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Re: Any info on A.I.inhibitor after 5 years?

Dear Ann

I hit my 5 yrs on Arimidex in Sept (they aren't counting the 3 months I was on Tamoxifen so I guess I am getting alittle extra). My onc told me he was going to keep me on longer but that was awhile ago. The last time I saw him (after Thanksgiving), he commented that I only had about a year to go. I decided not to seize that moment to discuss being on longer as I will see him again in May and that will be a better time to address it and then reassess as I have a current prescription that will carry me through until now (which would be about 5 months over 5 yrs).

It's a real crap shoot of a decision to discuss. There is no real data on being on an AI longer than 5 yrs although if highly hormone positive (and not Her2+) it might make sense to fight to stay on (as long as the side effects are not super debilating). But the Her2 positivity does need to be considered too... downgrade the hormone receptors/upgrade the Her2 receptors? No one really knows. I do know that staying on longer is in trial now but there are no preliminary results yet. I was hopeful there might be but then, the AIs have only been approved for early stage bc since October 2004 so even if they kept some of the early trial women on longer, they may not have analyzed any results (or perhaps there have been so little statistical results, they want to see how it fares in reducing very, very late recurrences (lets say after 10 yrs out) and those very late recurrences are rare too.

Have a frank discussion with your onc on the pros and cons. Another thought could be to ask to go on Evista which works like Tamoxifen but without alot of Tamoxifen's bad side effects (and its good for the bones too). I don't know the answer but I am searching myself for the right route to go especially since I still have both of my breasts.

Peace to you
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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 01-25-2010, 06:28 PM   #4
Nancy L
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Re: Any info on A.I.inhibitor after 5 years?

I would love to have your diagnosis. Your prognosis is so so good. Go celebrate!! But if you really want to learn about A.I. Research, three very impressive researchers/oncologists from Dana Farber answer some questions during this session which is mostly targeted at metastatic disease but talks about the various breast cancer tools and where it is all going. I am metastatic and I found it fasinating. Their comments raised my hopes.

http://www.mbcnetwork.org/video/ericwebversion2.html
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Old 02-03-2010, 09:38 AM   #5
suzan w
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Re: Any info on A.I.inhibitor after 5 years?

So glad you brought this up as I am also nearing the end of a 5 year arimidex regimen. I am between oncologists, the one in Seattle says 5 years will be enough,and the one in NM is not sure what I should do...hope someone figures it out soon!!!
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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 02-03-2010, 10:56 AM   #6
PinkGirl
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Re: Any info on A.I.inhibitor after 5 years?


My onc told me that it's not a "given" that I will stop Arimidex after
5 years ... we'll make that decision when the time comes. They are
counting the years from when I stopped Herceptin not from when I was
dx.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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