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Old 04-26-2014, 08:46 AM   #1
sassy
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EASY Button not working--Struggling with Zometa Femur Fractures

A lesser known but serious side effect of long term Bisphosphonate use is the development of Atypical Femoral Stress Fractures. As the pool of women who have been on these drugs for five or more years grows, more of these issues are coming to light and the medical community is becoming more aware of the issue---but much more awareness on the part of medical providers and especially patients is needed.

Always seeming to be the exception, I have been one of the unfortunate ones who has suffered from these stress fractures in my femurs after being on Zometa for 7 years. After struggling with joint stiffness from Arimidex, then a trial ruon on Exemestane which proved to be worse, I tried a period without an AI to let my hips recover. While feeling that my hips were indeed getting better, I continued to have problems walking and significant pain in my legs with even slight impact. After consulting with an orthopedist, we discovered last summer that I had stress fractures in both of my femurs, about four inches below the hip joint. While significant enough to be detected on x-Ray alone (no MRI was necessary) I was able to convince my Ortho to postpone surgery placing rods in both of my legs to see if the bones would heal. After three months of very limited walking, much to my Ortho's surprise, there was evidence of healing. That's the good news. The bad news is that we have no idea if they will fully heal and if so how long it may take. There is evidence to suggest that bisphosphonates stay in your system for up to 10 years, depressing the rate of normal healing. For a number of other reasons, I need to avoid surgery if possible, so trying not to have to take the rodding route.

My biggest threat is that I will misstep or fall and end up with a complete fracture of one or both of my legs. Really puts a damper on LOTS of activities. There is really nothing I can do to aid in the healing, other than walking and just being REALLY careful.

Week before last I took a little stumble--didn't fall-- but came down hard on my left leg. Been limping ever since and trying to convince myself it's just sore and I didn't do any further damage. Got my head in the sand.

I know life is never easy---but I just seem to be struggling with everything right now. Bad legs, can't do anything physically, work is hard--whine, whine, whine. Having a little pity party.

I share with you all, because you are the ones who will understand. How do you explain to people that you are basically walking around on broken legs, hoping they won't completely fail?

Thanks for letting me vent. Thanks for being my support.

Chin Up now.

For those of you on bisphosphonates-I do not in anyway discourage the use of them, but everyone should be aware of the risks.

I have found a wonderful group led by Dr. Jennifer Schneider, relating to these types of injuries. If you are using any type of bisphosphonates please take the time to read Dr. Schneider's article from the New York Times and make yourself aware of signs and symptoms to be aware of that could indicate an AFF issue.

http://www.nytimes.com/2011/03/08/he...bone.html?_r=0
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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 04-26-2014, 10:14 AM   #2
BonnieR
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

We'll come to your pity party! Everyone's entitled to one periodically and it sounds like you've earned it!
Amazing how things can snowball or have unexpected consequences It seems lately that I can't do anything without some negative reaction. Like even my recent root canal, which I won't go into!
This is quite the cautionary tale you are sharing and will surely be helpful to others.
I am not familiar with this drug so can't offer anything to the dialog
Keep the faith
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Post menopause
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"suspicious area" left breast
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Old 04-26-2014, 12:12 PM   #3
Pamelamary
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Hi Sassy,
While i haven't yet had any problems with Denosumab (the Zometa equivalent), I have certainly heard of the possibility - as if we aren't already walking on eggs!
Thinking of you and hoping those "broken" legs stay firm.
Best wishes.... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 04-26-2014, 03:29 PM   #4
Becky
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Aww Sassy. I didn't realize although I knew you were having some troubles. I am sure you are doing everything possible to heal and be well. Keep drinking your milk and popping Vitamin D tablets.

I really had no idea Zometa had this kind of side effect because I thought it was supposed to heal bones and make them stronger. Yeesh. Be careful and know I am thinking about you.
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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

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Old 04-26-2014, 08:44 PM   #5
Jackie07
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Sassy,

Thank you so much for sharing ...

Found the following abstract and hope it might help ...

Aging Clin Exp Res. 2013 Oct;25(5):605-9. doi: 10.1007/s40520-013-0137-3. Epub 2013 Sep 12.
Bisphosphonate long-term treatment related bilateral subtrochanteric femoral fracture. Can teriparatide be useful?
Tarazona-Santabalbina FJ1, Aguilella-Fernández L.
Author information
Abstract
Long-term treatment with bisphosphonates has been related to atypical femoral fractures. We report the clinical case of a woman who suffered a proximal diaphyseal oblique fracture of the left femur after uninterrupted 13-year treatment with alendronate. Shortly after surgery, a painful lytic image in the external cortex of her right femur diaphysis was detected. Some papers have suggested surgical treatment to repair femur fractures after long-term treatment with bisphosphonates. Otherwise, two studies have shown healing acceleration of bone fractures with teriparatide. A lytic lesion was treated with teriparatide obtaining progressive disappearance of symptoms as well as bone healing. This outcome may suggest a way of prevention of complete fractures in symptomatic patients with long-term treatment with bisphosphonates.
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Last edited by Jackie07; 04-28-2014 at 11:18 PM..
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Old 04-26-2014, 10:26 PM   #6
roz123
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

I recently asked my GP if I should be on zometa due to being put into menopause at such a young age. She said the studies are coming out now that unless you have significant bone loss ( and I don't know the parameters, but I did not reach them) they are being much more conservative on giving Bisphosphonates because of the long term effects. Here in Canada (public healthcare) they have changed the funding to much more serious cases
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Old 04-27-2014, 08:01 AM   #7
Saygoon
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Thanks so much for the info! I have been on Zometa for two years. Hang in there, seems like its always something and never hesitate to whine!
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Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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Old 04-27-2014, 01:02 PM   #8
StephN
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

This is not the news I was hoping you would post. The good news a while back on the partial healing was so encouraging. Now you have to keep biding your time, and continue to "walk on eggs" as was mentioned.

I have used Carlson's vitamin D drops for a few years now, especially during the winter months when I get NO sun. They seem to do well in keeping my D level up . My onc only has my vitamin D checked in the spring to see how well I did! I take it after dinner when I also take my eye vitamins, so I don't forget.

This seems like just another chapter in the problems that can occur with the bone strengtheners. Like Fosamax. Something I also was taking for about 3 years.

Spring is probably the worst time to be limited in your mobility! It is when we want to get out and DO things and GO places. Try to enjoy whatever is blooming around you - Mother Nature can have a way of cheering us up.
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Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-27-2014, 07:28 PM   #9
Laurel
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Rhonda,

Strontium! Add it to your high dose Vit D. I have gotten mine from SwansonVitamins.com.

You have every right to feel down about your situation. Busy people have no time to be less than 100%.
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Smile On!
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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 04-27-2014, 07:56 PM   #10
sassy
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Adding Laurel! Adding!

Thanks!
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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 04-27-2014, 08:13 PM   #11
Pray
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Re: EASY Button not working--Struggling with Zometa Femur Fractures

Sorry to hear of your fractures I'll keep you in my prayers.
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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)
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