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


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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
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https://www.surveymonkey.com/r/8MC3BRZ

Re: Calling All who have taken Bisphosphonates
 

I've taken it Rhonda and hope they get the next fifty needed.

Re: Calling All who have taken Bisphosphonates
 

Thanks Tricia!

Re: Calling All who have taken Bisphosphonates
 

I have taken the survey :)

Re: Calling All who have taken Bisphosphonates
 

Thanks so much Pray!