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Old 02-23-2015, 07:37 PM   #19
sassy
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Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Re: Ten Year Roller Coaster Ride

Thank you all for your kind words.

AFF or Atypical Femure Fractures resulting from extended use of bisohosphonates are probably more common that most realize and may be often misdiagnosed as hip fractures.

The benefit of bisphosphonate use to combate bone loss is typically expended in the first five years of use. Extending use beyond five years opens the door for some women to develop AFF's. So the moral of my story is know the risk, be aware of the symptoms, and stop use at five years. For BC patients, Zometa has an added benefit of prevention of recurrence. So if I had it to do over again-i would still take Zometa--but I would stop at five years.

Most women do not realize they have the fractures until they experience a complete break. At this point the only treatment is to rod the leg. For me, rodding is not a good option for a number of reasons--so I am very glad I realized something was wrong and saw an orthopedist before achieving a complete fracture.

The Hernigou Procedure to treat AFF's is relatively new. At this time I believe only Dr. Lane and one other doctor in the Midwest are performing the procedure in the US.

I will be talking with Dr. Lane's office this Friday and hope we set an appointment!

If anyone would like more info on AFF's PM me and I will be happy to assist. I belong to another group of Femure Fracture gals who rival us at HER2 in their AFF knowledge and support. There are several including some who are doctors themselves who, like me, find themselves in this situation following BC treatment.
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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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