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Old 08-31-2018, 12:40 PM   #1
sassy
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Exclamation Calling All who have taken Bisphosphonates

REPOSTING FROM STICKY ABOVE
WE STILL NEED ABOUT 50 PEOPLE TO COMPLETE THE SURVEY AND
I BELIEVE THE HER2SUPPORT COMMUNITY CAN MAKE THAT HAPPEN!
PLEASE COMPLETE THE SURVEY IF YOU HAVE TAKEN A BISPHOSPHONATES!


My Thirteen years of survival can be attributed to those before me who participated in research. Please consider participating--many of you have experience with Bisphosphonates!

Many of you that know me know that I suffered a broken leg on the eve of my son Preston Bowen and daughter in law Victoria Bowen's wedding. Subsequently I had rods placed in both of my femurs. What you may not know is that I did not break my leg----my leg broke. I had AFF's (Atypical Femur Fractures) in both femurs for about two years prior to the actual break as a result of the use of bisphophonates (in my case Zometa) during the treatment of cancer. Bisphosphonates are used not only in the treatment of cancer, but also in the treatment of osteopenia and osteoporosis---something many women face as they grow older.
Not everyone who takes these drugs experience the difficulty that I did, but research is needed to help determine who is at risk and how better to utilize these medications while diminishing the risks.
Dr. Jennifer Schneider and Dr. Jane Corrarino, who have both been very helpful to me personally in my seeking of treatment for this condition, and who head up a support group of people who have experienced AFF's, actively promote research into the study of the condition.
Below is a link to a survey seeking input from users of Bisphosphonates who HAVE NOT experienced AFF's, and/or who have been successfully treated for Osteopenia or osteoporosis with the drugs.
Please consider taking this survey to help gather information for research that will help everyone who may need the benefits of these medications.
Since my cancer diagnosis 13 years ago I have participated in every survey, study, etc. possible that might help others, because it was research that people before me participated in that ultimately saved my life.
If you have taken or are taking any drug classified as a Bisphophonate (a drug to build up or prevent bone loss) please consider taking this survey. If you are not sure, feel free to ask me if the drug you take may be one. I personally thank you for your participation.
Best,
Rhonda Hall Bowen



<A href="https://www.facebook.com/OurBodiesOurselves/?hc_ref=ARQzF_gxzeQqS-ylBZDxoj4s76F6KUQnoy3RKlrLzK2jwC_hemUtuHwACuNIx4ZI K-c&fref=nf" data-hovercard="/ajax/hovercard/page.php?id=85882130942&extragetparams=%7B%22hc_re f%22%3A%22ARQzF_gxzeQqS-ylBZDxoj4s76F6KUQnoy3RKlrLzK2jwC_hemUtuHwACuNIx4ZI K-c%22%2C%22fref%22%3A%22nf%22%7D" data-hovercard-prefer-more-content-show="1" data-hovercard-referer="ARQzF_gxzeQqS-ylBZDxoj4s76F6KUQnoy3RKlrLzK2jwC_hemUtuHwACuNIx4ZI K-c">Our Bodies OurselvesLike Page May 21 at 4:53pm




Do you take medication for osteopenia or osteoporosis? If so, please consider taking this survey.
Bisphosphonates are a class of drugs (including Fosamax (alendronate), Actonel (risedronate), Boniva (ibandronate), and Reclast /Zometa (zoledronic acid) that are widely used to prevent and treat osteoporosis.
A small proportion of patients who take these drugs for 3-5 years fracture one or both femurs after minimal or no trauma, often with delayed healing. It is not yet known why certain patients are at risk for this serious side effect. Some researchers are looking at possible genetic predispositions.
Jennifer Schneider M.D., Ph.D, is spearheading a study to try to find out what other factors might impact a person’s risk. She and her colleagues have created an online survey and are currently looking for a comparison group of women who took in the past and/or are currently taking any of these drugs but did NOT experience what is called an Atypical Femur Fracture.
The survey takes about 15 minutes to complete and is entirely anonymous. It can be accessed at https://www.surveymonkey.com/r/8MC3BRZ
__________________








https://www.surveymonkey.com/r/8MC3BRZ
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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
13 YEARS NED!

Last edited by sassy; 08-31-2018 at 12:46 PM..
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Old 09-03-2018, 02:38 PM   #2
tricia keegan
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Location: Ireland
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Re: Calling All who have taken Bisphosphonates

I've taken it Rhonda and hope they get the next fifty needed.
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Tricia
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 09-03-2018, 02:54 PM   #3
sassy
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Location: Mountains of Virginia
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Re: Calling All who have taken Bisphosphonates

Thanks Tricia!
__________________
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
13 YEARS NED!
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Old 09-05-2018, 01:10 AM   #4
Pray
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Join Date: Apr 2011
Location: Michigan
Posts: 1,171
Re: Calling All who have taken Bisphosphonates

I have taken the survey
__________________
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)
Aromasin 10/12
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Old 09-05-2018, 07:48 PM   #5
sassy
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Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Calling All who have taken Bisphosphonates

Thanks so much Pray!
__________________
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
13 YEARS NED!
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