Hi rbonnie, welcome to osteoporosisconnection and thank you, so much, for sharing your incredible story. Wow you are in an unusual situation. I'm so sorry about the fractures. Normally Forteo would be advised for those with spontaneous frax's, but the previous radiation is a major contraindication for it's use.
As you sure your oncologist can't weigh in with a decision? It's best to do what you are advised, but I sure wish your oncologist would give an opinion since you have several conflicting decisions on this. You don't want to inadvertantly expose yourself to bone cancer, so you'll need someone to tell you what is best for you to do.
The only other meds left are Reclast (once yearly infusion) and Boniva (injection given quarterly). It's hard to say if either of these two would work better than the oral doses of bisphosphonates, but if you go by what the clinical trials say by Novartis (Reclast) and Roche (Boniva), the injectable/infused meds have a better track record for preventing further fractures, and increasing bmd, but they also have contraindications as well--like those who have kidney or low calcium levels and why these individuals shouldn't take these.
The good side of this, is it sounds like you tolerated these oral meds ok, and therefore would probably have the same side effects from the infused meds, which sounds like you didn't have any negative ones.
I can give you some reading to do, that you can then take to *all* the Drs and see if you can't get one of them to agree with the other.
See the Reclast article I wrote that includes the New England Journal of Medicinies (NEJM) clinical trial on it, and some info from Roche on Boniva's testing (injectable form) and clinical study that is on page 3 and others. I hope this information can help you and your Drs to come to some resolution.
There is also another option, but it doesn't have *full* FDA approval yet and may not come till after Oct 19, 2009. It's a new drug, currently called Denosumab (proposed name Prolia) made by Amgen, and it's not a bisphosphonate. If you look here, you can read about a clinical trial that is on-going in NC, and the program coordinator can direct you to one in your area if you aren't close to NC, which is an FDA approved trial.
Here's an article by PJ Hamel on Denosumab to give you further info. You can also find quite a bit of literature on this since there was a head-to-head study done on it with Fosamax, by the NEJM and how Denosumab out-performed Fosamax in preventing all types of fractures in more places, and it also raised t-scores (bone density readings).
Sorry for the length of this, but you do have an unusual situation, and I would really like to help, if I can, even though I'm not a medical professional. I took Forteo and did really well on it after sustaining 6 vertebral frax's but I've *never* had radiation either.
After you get a chance to read the links above, and if you find you need more help just post again and hopefully we can help in some non-professional way.
Keep us posted on what you and your Drs decide and if you find a solution, which I certainly hope you do!! If you need more help just post again.
pam i just want to thank you so much for your thoughtful and considered answer. sometimes my situation is so confusing that i hardly like to bring it up. i took a chance mentioning it here, and i am gratified by your response. i will look into all those studies that you linked, also i will ask my drs. about the other drugs you mentioned....i too wish my oncologist was more informed but its almost like the 6 blind men and the elephant, each specialist is involved in his part of me, but none of them see me as a whole person! i need them to sort of get together but that wont happen of course....my ortho did call my onc but the onc wanted to know why i couldnt just stay on the bisophos. med and the ortho said well they havent been working, so the onc said ok let her have the forteo. it was actually ME who did the research and found the contraindications. how scary is that? and ps my onc is a big doctor at one of the big new york hospitals, he is supposedly at the forefront of all these things. but i guess he cant know everything...
pam, its very kind of you, even though you are not a med professional, to spend time here giving out your sound and caring advice.
thank you,
rhonda