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03-24-2010, 11:21 AM
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#1
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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crazy idea to "trick" AI joint pain
Hi Amazing Group,
Okay, tell me if this is crazy or what - when I started with Arimidex it took a few months to have the joint pain in my hands advance to intolerable - then I switched to Femara and again it took a few months to have lower body join pain advance to the point where sometimes I can barely walk - so now I want to try Aromasin and see what happens.
So here is my crazy question: would it be ridiculous or medically unsound to just keep switching every two to three months to stay ahead of the joint pain each one causes since they seem to hit different areas?
I see my oncologist this Friday - but I have always found the best information here so then I can take it to her and discuss it.
Let me know what you think - and Thanks!!!!!
Love to you all, Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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03-24-2010, 04:09 PM
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#2
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: crazy idea to "trick" AI joint pain
Now this is an idea, ask you Dr. I have stayed with
arimidex but its not easy. What type doggie is that,
Looks like my baby schnauzer but everyone says she
looks like a black lab.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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03-24-2010, 06:47 PM
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#3
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: crazy idea to "trick" AI joint pain
Interesting idea! You know there is no data out there to support your choice, so you will be flying blind. Of course, if this allows you to stay on the therapy as opposed to quitting as so many E.R.+ patients do, I would think it would be considered worthy of a try. Please post back what you Onc. has to say!
__________________
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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03-24-2010, 07:00 PM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Re: crazy idea to "trick" AI joint pain
Donna,
I switched back and forth between Arimidex and Femara several times. I started on Femara and developed tinnitus after 6 weeks. I switched to Arimidex, which lessened it slightly. I stayed on Arimidex for 11 months, until I hit the wall with joint pain. I went back on Femara at that point, and at 11 months, hit the wall there with joint pain, and went back to Arimidex. I switched once more and then stopped AI tx at 3 years. My onc had no problem with me going back and forth on them.
Best of luck to you,
Hopeful
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03-24-2010, 08:02 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: crazy idea to "trick" AI joint pain
Interesting strategy! I have taken a 2 week hiatus from Femara because of "trigger thumb." To see if there is improvement. Then probably switch to another AI
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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04-04-2010, 09:26 PM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 203
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Re: crazy idea to "trick" AI joint pain
I have found glucosamine/chondroitin supplements to help significantly with joint pain -- recently, I was having terrible pain and I realized - whoops, had stopped taking my supplements. I'm back on for a week and it's getting better rapidly. Your mileage may vary.
__________________
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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04-05-2010, 09:25 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: crazy idea to "trick" AI joint pain
I was experiencing significant joint stiffness and pain after being on Arimidex for a while. My GP was exploring ways to help with this side effect and put me on Lasix. It reduced my pain and stiffness by at least 50%!
I have mentioned this in the past, but not sure if anyone has given it a try. Might be worth a shot.
__________________
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.......
14 YEARS NED!
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04-05-2010, 01:31 PM
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#8
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Re: crazy idea to "trick" AI joint pain
Hi Ronda,
Actually joint pain is listed as a significant side effect of Lasix - it is a diuretic - the only thing I have ever personally heard it being used for is congestive heart failure - it helps dissipate excess fluids. The way I understand it, and I have to say I really don't understand it - the joint pain we experience due to the AI's is in some way they affect the synovial fluid in the joints - so, if there were a build up of fluid, maybe this is how Lasix would work? I thought maybe it was a lack of fluid that prevented smooth joint action, but maybe it is the opposite?
Wonder who we could ask about this?
Best to you, Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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04-05-2010, 03:51 PM
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#10
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Re: crazy idea to "trick" AI joint pain
Dear Hopeful,
That was very interesting information - thank you! :-)
Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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