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Old 06-18-2014, 11:20 AM   #1
tricia keegan
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Wink 9 years out & Goodbye Arimidex!

For anyone not on Facebook I'm pleased to say my Mammo was clear so I'm officially nine years out now, also my Onc said she really felt I had done all I could, and done everything right and at this stage I should stop taking Arimidex and enjoy my summer!! She'll update me yearly anyway but she said the results of the study in taking it for longer than five yeara won't be in for 2-3 years and there's really not enough evidence for me to continue taking it (in view of me telling her I was going back on Glucosamine as the joint aches were getting worse, So, I have mixed feelings, scared to be losing my crutch after eight years but very excited too and hope it won't be too long before I feel "normal"....she did remind me I'm almost ten years older though lol!!

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x
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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 06-18-2014, 12:15 PM   #2
donocco
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Re: 9 years out & Goodbye Arimidex!

Tricia

Congratulations. I can imagine the feeling of insecurity after stopping Arimidex. There have been reports after reports about the anti cancer action of Nsaids like Motrin. If your oncologist agrees perhaps you could take one 200mg Motrin tablet as a preventative. Also a Vitamin D supplement to keep the Vitamin D levels up. I remember an article in the American journal of Epidemiology where women who took Motrin (Ibuprofen) at least four times a week had a 50% decrease in their breast cancer rate. This was in the 1990s. Another anti-cancer supplement seems to be Selenium 200mcg daily. Talk with your oncologist about these.

Paul
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Old 06-18-2014, 01:12 PM   #3
suzan w
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Re: 9 years out & Goodbye Arimidex!

Congratulations Tricia!!! 9 years feels good!!
__________________
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 06-18-2014, 02:06 PM   #4
lkc Gumby
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Re: 9 years out & Goodbye Arimidex!

Congratulations and welcome to the 9 years club. Its wonderful.
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-18-2014, 02:10 PM   #5
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Thank you Linda and Suzan and I'll be sure to call her tomorrow and ask about that Paul! I do take calcium/vitd daily though and she prescribed an anti inflammatory although I can only take these for three days at a time she said to ease any pain due to my hiatal hernia which I take a daily Nexium for since the chemo.
__________________
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 06-18-2014, 04:38 PM   #6
sassy
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Re: 9 years out & Goodbye Arimidex!

Big congrats Tricia!

I took a break from Arimidex for a year following my femur stress fracture dx. My onc has now started me on tamoxifen. Still a safety net!

Best wishes
__________________
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 06-18-2014, 06:29 PM   #7
Bunty
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Re: 9 years out & Goodbye Arimidex!

Woo hoo Tricia! Enjoy your summer - I believe it's shaping up to be a good one.
Best wishes, Marie
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Old 06-18-2014, 09:09 PM   #8
Pray
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Re: 9 years out & Goodbye Arimidex!

How wonderful for you�� Gods blessings to you and yours��
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 06-19-2014, 03:52 AM   #9
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Thanks everyone and it'll seem odd not taking it after all this time. Rhonda did your joint aches improve while off it??
__________________
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 06-19-2014, 05:52 AM   #10
chekmark
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Re: 9 years out & Goodbye Arimidex!

Fantastic news, I never get bored with these stories, can't wait to be off of the femara but my oncologist is telling me 10 years, 7 to go, man that sounds like a lifetime but I plan on being here to post that I'm done like you did. So happy for you. Enjoy your summer indeed, enjoy life cancer free, cherish every day..... There is hope for us all...
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 06-19-2014, 02:47 PM   #11
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Thank you Chekmark and I'm sure you'll be posting here too one day, I was prepared for ten years on Arimidex but Onc said no studies out yet so we decided on a break for now
__________________
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 06-20-2014, 06:14 PM   #12
Laurel
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Re: 9 years out & Goodbye Arimidex!

Tricia,

You will feel improvement very soon. Just to squat down to pick up something from the floor without severe pain will surprise you, because my bet is you have become accustomed to the chronic pain. I have switched back to Tamoxifen after my 3 years of Femara. My joint pain is so much improved. I do take 2 caps of Tart Cherry Extract, which is a mild anti-inflammatory, to help when I overdo things! The aging process continues!
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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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Old 06-20-2014, 08:10 PM   #13
caya
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Re: 9 years out & Goodbye Arimidex!

Great news Tricia! You'll feel better soon - it took about 6 months after I was off Femara to realize that I had much more energy, my hair and nails were growing more quickly, just felt a lot like the "old" - read before BC - me!

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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Old 06-20-2014, 09:40 PM   #14
Becky
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Re: 9 years out & Goodbye Arimidex!

Congrats girl. I'm thinking about you.
__________________
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 06-21-2014, 12:01 PM   #15
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Thanks Becky, Caya and Laurel, Laurel you're so right and I've become so used to feeling ninety I've forgotten whats normal anymore!

My Onc said if I really want to go back on it after a few months I can, but its a good idea to take a break after eight years anyway.
__________________
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 06-21-2014, 02:03 PM   #16
janieR
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Re: 9 years out & Goodbye Arimidex!

Tricia

9 years. So very pleased for you.

Try and enjoy every moment of the summer and hope coming off arimidex you will feel somewhat better. You deserve it.

Janie
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Old 06-22-2014, 02:40 PM   #17
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Thanks Janie!!!
__________________
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 09-22-2014, 03:12 PM   #18
CLD14
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Re: 9 years out & Goodbye Arimidex!

Hello everyone...did any of you have your oncologist counsel you on what to do to help your bone health...once beginning Arimidex? Mine has just told me he will do a bone scan yearly to check...that aches most likely will occur.
I have been taking Vit D for some time, even before bc diagnosis.
Try to get calcium through my diet and do exercise/walking.

Have some arthritis going before bc also. Have not taken anything like Motrin on going...just grin and bear my aches....if I worsen because of the Arimidex sounds like Motrin will be added : )
Thank you
Cindy
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Old 09-22-2014, 03:58 PM   #19
tricia keegan
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Re: 9 years out & Goodbye Arimidex!

Cindy, I think its a Dexa scan your Onc will do, this will give a baseline to detect any bone loss and hopefully, its better to take calcuim and vit d together if possible daily and exercise if you can.
__________________
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 09-24-2014, 10:19 AM   #20
CLD14
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Smile Re: 9 years out & Goodbye Arimidex!

Tricia,
Thank you : )

My diag. July 2013 (63 yrs old) .....sounds similar to yours.... IDC Stage III C Triple +

I have had chemo, lumpectomy, radiation
I have been on Herceptin and soon will be finished : )
All is looking well.

I wish you continued health and feeling better !
Cindy
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