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Old 07-16-2016, 07:29 AM   #1
Jean
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Femara

Hi All,
I have been on Femara now for 10 years. Last visit to onc. said I could continue if I wanted to since I was doing well.

The last few weeks I had begun to have strong joint pain. Enough so that when I sit too long, when I get up from the seat or car it is painful. Knee joints are so stiff and hurt. Walking and moving helps but the pain is always there. I do have a high pain tolerance. I decided to stop the Femara last Monday. Today Sat it is an amazing difference. Almost no joint pain especially in the knees.

I am wondering if anyone took a vacation from the Femara and then decided to return to taking Femara.
If so how long were you taking it and how long did you take a break?

Thank you for sharing.
Best to all.
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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Old 07-16-2016, 11:45 AM   #2
donocco
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Re: Femara

Jean

Ive read some articles that pointed to high Vitamin D levels as relieving aromatase Inhibitor joint pain. In one article I found on Pub Med the level of 25-Hydroxycalciferol (the active form of Vitamin D) was 66ng/ml so you should aim for a level of 70, high but not toxic. High Vitamin D levels also seem to delay cancer spread and extend lifespan. Talk with the doctor.

Paul
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Old 07-16-2016, 02:20 PM   #3
tricia keegan
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Re: Femara

Jean I stopped at two years ago after eight years on the advice of my Onc, she recently wanted me to start again for another two years due a recent study showing ten years would be more beneficial. I must have been so used to the pain in those eight years that I didn't notice it anymore but since I started taking it again I'm in a lot of pain, mostly on waking when it hurts to just get out of bed! I'll continue for now and hope it gets easier but interested in Donocco's reply to you so may look into my Vit D intake.
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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 07-16-2016, 03:14 PM   #4
Melissa
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Re: Femara

Hello Jean,

Going into my tenth year on arimidex and did stop at the nine year mark but oncologist suggested I take it again at my 10 year appt. (first year after
Treatment I took tamoxifen then had a oophorectomy). She also recommended vitamin D so I'm taking it and I do think I notice less joint/bone pain. My oncologist recommended I continue taking it as long as I can, as she said studies show triple positive tend to be at greater risk than her2 + folks after 10 years. Didn't think about it but I should have ask where to find these results, maybe it's mainly because of my lymph node involvement.

And congratulations on your 11 YEAR MARK!
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2022 - 16 year survivor!
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Old 07-16-2016, 03:47 PM   #5
donocco
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Re: Femara

If you go to pub med and type Aromatase Inhibitor joint pain and vitamin D level click on the 2nd abstract. That is where the 66ng/ml Vitamin D level is mentioned

Paul
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Old 07-16-2016, 03:55 PM   #6
tricia keegan
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Re: Femara

Thank you Paul, I'll look into it.
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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 07-16-2016, 05:14 PM   #7
jaykay
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Re: Femara

Hi Jean,

I'm in a little bit of a different situation. I was on tamoxifen for 4.5 years and Femara for 5 years. With my oncologist's blessing, I stopped Femara in January 2010. In September 2012, I developed a "new primary" in my other breast (aka the good one :-)) with the exact same pathology as the original cancer. Please note the quotes around "new...". I take the "new" terminology with a healthy dose of skepticism.

Intellectually, I know that Her2 is the reason for the new cancer but I couldn't help but think if the Femara was helping to keep things under control as well. And it was nice going off the drug.

Anyway, back on Femara for the past 3 years and I see no end in sight. I'm not sure if the joint/back/etc pain is age or AI related - probably a combination of both. I know the AI has not helped my osteopenia. I do take Vitamin D3 daily and my numbers are consistently in the high 50's which is where my docs like it. I also exercise regularly.

I have no answers for you other than to enjoy the break and see how you feel in a month or so. I was told (a long time ago) that it takes a month for AIs to get out of your system.

Best
Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 07-16-2016, 06:15 PM   #8
Jean
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Re: Femara

Paul,
Thank you for the advise. I was taking high Dose of Vit.D3 for years and just this year (for no reason) had stopped taking Vit. D3
Hence the heavy joint pain. Will begin my routine of Vit. D3 starting tomorrow.

It appears that the onc. want us to stay on the IA. Janis I am happy to know that the drug stays for a month.
I will take another week break and begin again.
In the meantime I will get back on my Vit. D3 in preparation during my break.

I have to agree that being triple positive is a higher risk.
Warmest thanks to all for your help.
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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Old 07-16-2016, 08:13 PM   #9
Becky
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Re: Femara

I will be on Arimidex 11 years in Sept. My onc has no problems with this and wants me to stay on. However, several months ago I went on an almost 2 week business trip and forgot them. I thought it might be a good test. As many of you know, I like my research. Arimidex and Femara have a 2 day half life so basically in a week, very little is left. Depending on your individual metabolism, it takes 3-6 weeks to get effective circulating levels back when resuming. I think this is why when women start, they don't get the joint pain (if you're going to get it) for a month or so. The short half life is why you feel better so fast when stopping.

I never got joint pain but have a bad back. I felt no different. I resumed when I got home and had back problems a month later. I don't know if this is coincidence. I had some back issues prior to bc. I take d3 and have over 60 level. I was 70 once.

I just wanted to set the record straight on that AIs don't stick around that long after you stop and it takes a few weeks to really start working when you do start or restart taking them.
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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 07-16-2016, 09:49 PM   #10
donocco
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Re: Femara

Ill have to check on the half life of Arimidex etc. The general pharmacy rule is that it takes 5 half lives to get a steady state blood concentration. Once you reach steady state the drug starts to work. The prototype example is the anti-seizure drug Dilantin. Its half life in adults is about 24 hours so you have to take it for about 5 days before you get a steady state concentration that will suppress siezures. Docs circumvent this by giving a loading dose of Dilantin of 1000mg the first day ie three 100mg Dilantin capsules in the morning of the first day, three capsules in the afternoon and 4 capsules at bedtime. This gives you a therapeutic blood level on the first day. All the following days, the patient will take the usual Dilantin dosage of 400mg daily often 4X100mg capsules at bedtime.

If the half life of arimidex is 2 days it should only take anout 10 days to reach an effective steady state level however its possible that the Arimidex is a prodrug that the body changes to an active drug and this active drug has a half life of maybe 5 days so it takes weeks to get a steady state level. Ill check this out.

I remember an incident that happened when I worked the night shift at a Longs drug store in Santa Monica California. It was one of those difficult days. One patient was on the diet pill Fastin and the doctor never called back about the refill request. He asked me for 3 Fastins to cover him over the weekend. I can only do this with blood pressure meds, seizure meds, anti rejection meds etc. The pharmacy law does not allow me to do this with Fastin which is a controlled amphetamine like drug. He had a temper tantrum and called me every name in the book and called for the manager who tried to push me to give him a few pills. I refused citing the law. More tantrum more insults etc.

Finally he left. About 10 minutes later the technician told me there was a woman who wanted to speak to the pharmacist. She was crying and I said to myself "My God what now?" I spoke to her. She was a breast cancer patient on Tamoxifen 10mg twice a day and missed a day. She was sure the breast cancer was going to come back because of her carelessness.

I brought her a package insert on Tamoxifen and showed her that the half life of Nor-Tamoxifen the active drug (Tamoxifen itself is an inactive prodrug) is 21 days. Missing one days dose would have no effect. I told her I hoped and prayed that the cancer would not return but it could return (she knew this) and if it did there was absolutely no way she could assume blame saying "I missed one 10mg dose of Tamoxifen." I took a 100 pound weight off of her back. Being a pharmacist dealing with the public has a few "moments of usefulness."

I'm sure many of you are aware that drugs that inhibit the enzyme Cyp2D6 shouldn't be taken with Tamoxifen. Examples of such drugs are Fluoxetine (Prozac) and Bupropion
(Wellbutrin) both antidepressants. The reason is the body uses theis Cyp2D6 enzyme to change the inactive Tamoxifen to the active Nor-Tamoxifen. There are other drugs that inhibit Cyp2D6 such as Dextromethorphan and Quinidine. Sorry this has been so long.

Paul
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Old 07-16-2016, 10:34 PM   #11
donocco
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Re: Femara

I did some quick research. Becky was correct. The terminal half life of Femara is 2 days but it takes 3-6 weeks to get a steady state. According to what I learned it should only take about 10 days to reach steady state. Maybe when a drug binds to an enzyme and inhibits it, the kinetics get more complicated and you cant use the steady state= 5X half life rule. I leaned something valuable
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Old 07-17-2016, 08:41 AM   #12
jaykay
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Re: Femara

Thanks, Becky and Paul for the correction. I did some research as well. I can't remember who told me 30 days way back when but they probably had incomplete science

Best
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 07-19-2016, 07:05 PM   #13
suzan w
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Re: Femara

My oncologist had me stop taking Arimidex after 5 years. That was 6 years ago. Hope I am not missing something!!!
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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 07-20-2016, 05:30 PM   #14
chekmark
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Re: Femara

My story is a little different, my oncologist suggested that I stay on femara for 10 yrs, well she retired and my new oncologist which I really like said that 5 yrs was enough. I asked about the studies and the 10 yrs compared to 5 and she said there isn't a significant change in outcome and the study is still being done. With the joint pain, weight gain etc she said she felt ok with me going off it, I went off of it 3 months ago and I feel pretty good, hopefully it stays that way. It's so confusing when one doctor says one thing and another says the opposite. We put so much trust and faith in our healthcare system. I'm fine with my decision, I was glad to just be done with the one last thing that still held me to a cancer diagnosis. I was able to manage the joint pain while on it so it wasn't horrible but the puffiness that came with it was annoying, since I have been off the puffiness is gone, i feel like my old self again. Time will tell. Fingers crossed.
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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
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Old 07-21-2016, 09:25 AM   #15
Hopeful
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Re: Femara

Here is a link to a timely abstract in the NEJM http://www.nejm.org/doi/full/10.1056...4700?query=TOC Unfortunately, the full article is not available for free. The conclusion, though is interesting - extended AI therapy resulted in longer disease free survival, but they were unable to demonstrate an increase in overall survival. The extended therapy also was effective in preventing additional bc in the unaffected breast.

Hopeful
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Old 07-21-2016, 02:33 PM   #16
tricia keegan
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Re: Femara

The trial results my Onc referred to were just released in June this year at ASCO, she always attends so had the stats ready for me in her office. I'm not sure if this is the exact study she mentioned but it looks similar https://www.asco.org/about-asco/pres...cer-recurrence
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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 07-22-2016, 08:38 AM   #17
Hopeful
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Re: Femara

Tricia, the NEJM article was about a Canadian trial, and your link is to an article about a Canadian trial as well. I believe you are correct, it is the same one.

Hopeful
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Old 07-28-2016, 02:07 AM   #18
Morgan
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Re: Femara

Hi, I am 11 years post diagnosis :-) I am wondering if anyone has taken tamoxifen after 10 years of arimidex?

I was diagnosed aged 45 in June 2005, I chose to have bilateral mastectomy and then had chemo, radiotherapy and year of herceptin. I started arimidex in Feb 2006 and have been on it ever since. I had an appointment yesterday at the breast clinic and was advised that I shouldn't be on arimidex any longer, I said I was worried and really wanted to keep taking it but doc said that after 10 years my body would have got used to it so really wouldn't be getting the protection...he then said I could have 5 years on tamoxifen.

I had heard of cross talk between Her2 and tamoxifen but didn't look into it as had hysterectomy aged 42 so didn't apply to me as I could take arimidex. I have had a google now but to be honest haven't a clue :-( Any advice would be very much appreciated.
I will also post this as a new topic.

Thanks
Morgan
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Old 07-28-2016, 01:43 PM   #19
tricia keegan
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Re: Femara

Thanks Hopeful, great minds!

Morgan I just replied on your other thread.
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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 09-07-2016, 06:50 PM   #20
karen z
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Re: Femara

The two links above seem to be from the same article (attached).
Attached Files
File Type: pdf Extending AIs Adjuvantt Therapy to 10 years.pdf (250.8 KB, 156 views)
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