Survey on bisphosphonates-please participate
 

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

Re: Survey on bisphosphonates-please participate
 

Rhonda,


Curious to know what you and your medical team are doing to strengthen your bones other than the rods. This is a very interesting thread as the worry of my bones becoming actually weaker stopped my use of Clondronate, a bisphosphonate. I think you will get responses to your survey as there are many here who have been on one form of bisphosphonate or another for many years of continual use.

Re: Survey on bisphosphonates-please participate
 

I just took the survey. I have been on Fosamax for 4 years now. I just had a bone scan a couple of weeks ago and my results were better than they were 2 years ago. I still have osteopenia but a bit less. Given I am on an estrogen blocker, Arimidex, I'll take that result!!



I walk and also do a workout called TTapp which has been clinically proven to improve bone density without weights. It has definitely worked for me and I will continue to do it! If anyone wants more info, please pm me. :)


Carol Ann

Re: Survey on bisphosphonates-please participate
 

Done, is it okay to share this survey?

Re: Survey on bisphosphonates-please participate
 

Please do share- more participants provides more data.

Re: Survey on bisphosphonates-please participate
 

I just took the survey :)

Re: Survey on bisphosphonates-please participate
 

Thanks Sassy!

Re: Survey on bisphosphonates-please participate
 

done - thanks!

Re: Survey on bisphosphonates-please participate
 

be happy too!.

Re: Survey on bisphosphonates-please participate
 

My 2 cents worth is now in the survey. Thanks for posting this.

Re: Survey on bisphosphonates-please participate
 

Very interesting. Thanks for posting the survey.

Re: Survey on bisphosphonates-please participate
 

Took the survey. Did take Clastoban because I had some bone reduction during treatment but so far, broken bones have not been my problem. More problems due to radiation for me.
Health and happiness
sarah

Re: Survey on bisphosphonates-please participate
 

Hi

Survey done!

Juls

Re: Survey on bisphosphonates-please participate
 

Thanks to all who have participated. We need about 50 more folks so please share with anyone you can. I will try to keep everyone posted with news as I have it available!

Re: Survey on bisphosphonates-please participate
 

Morning Sassy.
I completed the survey back when you posted it however I just found out yesterday i have a stress fracture in my right femur. Not terribly painful just annoying really. I see my onc in 3 weeks and would like to go with suggestions on how to proceed as when I mentioned the pain could be due to biphosphonates he scoffed.
Please, if you have time, could you tell me what you and your onc did to help and how you are going?
Many thanks,
Jenny

Re: Survey on bisphosphonates-please participate
 

Hi, having recently been diagnosed with osteoporosis and advised to go on bisphosphonates, I suddenly started to look at the issue. For those on estrogen/hormone adjusters of various sorts the water is muddied, because estrogen and these chemicals all affect the situation. But for those of us who are not, ie who are Er- and Pr- I was really interested to learn that the body draws a lot of calcium out of the bones when pH levels need to be adjusted in a big way. And this happens when the body has a large amount of protein to break down. And this happens when tissue is destroyed in large quantities. Which is what happens during chemotherapy and radiotherapy isn't it?

So why ISN'T this aspect of chemotherapy/radiotherapy being managed as it happens and as the protein (from tumour damage and also from all the damage to our body cells) is being broken down in the body? And why ISN'T this big loss of calcium from our bones being managed and reversed? This is a whole different ballgame to old-age osteoporosis and needs different research, different treatments and a different understanding.

Re: Survey on bisphosphonates-please participate
 

I'm not sure if this thread is still open, but I finished my chemo and rads for ER- PR- Her2+++ 14 years ago. I had A/C, Taxol and Herception but no bone strengtheners. Now I have low bone density and Endocronologist wants me on bisphophonates. Should I? She is concerned about mini spinal fractures when I'm in my 70s and 80s. I'm 61 now. Any thoughts, recommendations?