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Old 11-01-2007, 11:02 PM   #1
sassy
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Switching AI's ?

I have been on Arimidex for two years now with continued joint stiffness. I am interested in hearing from others who may have switched from one AI to another and had success with less side effects. I am very comfortable with my treatment plan, but would like to explore the possibility of change to improve QOL.

Thanks for any info you could share.
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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 11-02-2007, 06:39 AM   #2
Hopeful
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I started on Femara, and developed severe tinnitus. I switched to Arimidex, and have less severe tinnitus, but occassional joint pain (mainly in my thumbs) that I did not experience on Femara. For some reason, the joint pain seems more pronounced in patients taking Arimidex. I find it easier to deal with than the ringing in my ears, so I live with it.

Hopeful
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Old 11-02-2007, 12:48 PM   #3
dhealey
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I started with arimidex and was on it 4 months and was switched to aromasin due to severe joint pain. Have been on the aromasin for about a month now with no problems yet.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 11-02-2007, 03:40 PM   #4
Diane H
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Cool Painful joints

I have been on Femara for about two years and it has been a painful experience - my oncologist feels that switching AI's will not be helpful and most sadly has no other solutions to offer. I have heard that Cymbalta and Celebrex have been helpful to some. Hope someone has some positive info on this subject.
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Old 11-02-2007, 06:13 PM   #5
Debra
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Sassy -

I was on arimidex and had severe joint pain. I had problems even walking down my stairs and I am only 42. I switched to Aromasin in August and it is so much better. I still have stiff knees but my pain is nothing like it was on the arimidex. It really was worth switching. My oncologist in Minneapolis even commented that a very recent study has shown aromasin to be slightly superior to arimidex so that sealed the deal with me!! I would suggest you look into the switch as my oncologist said "why suffer if you don't have to"!
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 11-02-2007, 07:40 PM   #6
sassy
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Thanks for your replies ladies. Debra, did you take tamoxifin prior to AI? Was doing some research on Aromasin and it stated recommended after two to three years of tamoxifin.

I think my onc will be willing to try another AI. Will see him in a few weeks and want to have some info to present to him.
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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 11-02-2007, 08:44 PM   #7
Bev
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Hi Sassy,

I've been on Arimidex for a few months now. My hands and knees do ache but not enough to quit anything.

So maybe a switch will be helpful but still have the same protective effects. BB
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Old 11-03-2007, 08:27 AM   #8
Debra
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Hi Sassy -

Yes I did start out with Tamoxifen and was on that for about 1 year but then opted to have a total hysterectomy so I could switch to an AI. So I have been on all three. It will be only two years for me on Nov. 15th since diagnosis and already I have been on those three meds! I truly have to say it again----my body feels much better on the aromasin vs. the arimidex. I really didn't know if I would have made it five yrs on the arimidex but certainly would have tried my best if that was my only option as I want all the guns available. A co-worker of mine was on arimidex about 6 months longer then I and she did say it got better. I wasn't even on it for a year and maybe I should have given it longer but as I mentioned in my previous post, my oncologist said "why suffer with the joint pain if you have another option" so that is why I switched. I didn't research aromasin prior to that but just trusted her that this was okay.
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Debra

Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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Old 11-04-2007, 06:06 AM   #9
Kimberly Lewis
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thanks for asking this Rhonda - I started on Tamoxifen then have been on Femara quite awhile now. I struggle to walk at times and the pain has progressed. It started with feet and ankles then knees, now back and wrists! Maybe aromasin would be an answer!
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 11-09-2007, 12:32 AM   #10
Cannon
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Smile Why Not?

If your current AI is making you miserable, why not try another? I know some people say the side effects aren't any different, but we know better than to believe that!

I took Arimidex and was crippled with pain within 2 weeks. I was willing to keep taking it, if my doctor would give me pain medication. He said, let's try something else. I said, aren't they all the same? He sais, you never know. I switched to Femara and the pain is not gone, but it's a 2 out of 10 instead of a 7 out of 10. That I can live with!
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 11-09-2007, 06:06 AM   #11
michka
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I started directly with Arimidex and had to stop after 6 weeks. I could not move at all in the morning and needed help even to get out of bed. I had pain in my rists, knees, feet and my back was killing me. I wanted to continue, hoping it would improve, but my onc. had me stop 3 weeks (what a relief! all the pains disappeared). I then started Aromasin. I have been taking it 4 months. It is better but not good. I can live with it at least. I have pain in my hands and feet. I still have pain in my knees and back, but less than before. So it was worth switching even if I hoped better.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-09-2007, 10:14 AM   #12
sassy
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I'm at my onc's office now--waiting for bloodwork. He readily agreed to switch to Femara as soon as I'm ready. Right now I'm going to wait a couple of weeks. My GP has just switched my BP meds, trying to alleviate some more fluid, as we are trying to find a way to get me off Neurontin because of the weight gain. Its great--but my weight is steadily going up.

So the Femara will start in a couple of weeks, and we'll see what these various changes bring for QOL.

All in all, I'm doing well---I just want to be doing the best that is possible.

Thanks all, I'll keep you posted.
__________________
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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