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Old 03-03-2007, 02:51 PM   #1
MJo
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Arimidex and Pain

I have been on Arimidex for 8 months. For about six months I had very manageable aches and felt fortunate. Lately the pain in my ankles, feet and knees is getting stronger. I'm worried. If it gets any worse, I'm afraid I won't be able to walk easily. Did this progression happen to anyone. Did the pain get worse, better, stay the same?
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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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Old 03-03-2007, 04:00 PM   #2
Chelee
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I wasn't on the Arimidex, but I was on the Femara. It caused alot of pain. Sometimes I wondered if it was all due to the Femara, but now since my onc pulled me off of it over a month ago all those aches and pains are gone. Big difference. But I am very concerned about not being on any AI.

So I do think it is very possible its the Arimidex causing those problems. I've heard many other women complain about those same things. The things we have to do in order to keep "it" away.

Hang in there.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 03-03-2007, 04:40 PM   #3
tricia keegan
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Same here!!

I began Aeimidex last Sept and was okay until about two months ago when my back pain became very severe every day even when in bed and I began to walk like I was 90 instead of 47!
I insisted on a bone scan I was so worried which came back fine thankfully but even the two last fingers on each hand are so bad with neuropathy they just seem to "lock" and are very painful to stretch or move.
My Onc prescribed Condroitin/glucosamine but so far no improvement as my dexa scan showed bone loss I begin Fosamax next week.
I do still try to keep exercising usually swimming and walking but even in this I'm so much slower than I used to be.
I'm not sure what the answer is but am too nervous to stop taking it as it's preferable to the alternative of course,I just hope in time it gets easier.
You're definatly not alone in this!!
Tricia
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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 03-03-2007, 04:45 PM   #4
Jean
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Wink Pain Pain GO AWAY !

Hi MJO,

Yes, I had a lot of pain with the Arimidex, my ankles and feet, knees also just
like you. Also had pain in the upper neck and one shoulder. It was bad and
it was difficult in the mornings getting out of bed. What I found that helped
was exercise. But when I came off Arimidex (to go on Chemo) the pains stopped very quickly - so therefore for me the Arimidex was the culprit.

After chemo I discussed the pains with my onc. and Femara and Arimidex
are pretty much the same....but one drug can effect us differently and
I thought it was worth for me to try the Femara. I do not have the
pain I did on the Arimidex. It has been 90% better for me.

Hope this helps.
Kind Regards,
Jean
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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 03-04-2007, 07:27 AM   #5
CLTann
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I had Arimidex as shown under my signature. The pains are gone after switching to Femera. Now I have a sciatic type of pain, which is not as bad as before.
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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 03-04-2007, 07:37 AM   #6
MJo
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Thanks, as usual. I have my 3 month checkup in april and will discuss. Meanwhile, I will try the glucosamin/chond. It's worth a try. I walk a mile five times a week. When I'm on level ground, all I get is aches. When I walk up a hill - even a low hill - I get stabbing knee pain. In the morning when I get up, I hobble around. Sometimes I feel like my ankles are going to snap in half.

I read about herceptin that doctors are finding more heart conditions in clinical practice than there were in clinical trials. Duhh. I bet doctors are gathering more reports of pain with AIs than there were in clinical trials. Still I am grateful that there is something to stop my cancer. So I will keep going as long as possible. Hopefully five years. Maybe something new will come along. Thanks again, ladies.
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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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Old 03-04-2007, 10:00 AM   #7
Sheila
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MJO

My Mom had been on Tamoxifen for some time when they desided to switch her to Arimidex....after 3 months they had to take her off it because of the leg, knee and back pain. She never had any of this on Tamoxifen. She is doing good now with nothing...was a 19 year survivor in January...she is not Her2 though, but she is my hero!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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