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@windyshores , when you say one out of 5 radiologists would have recommended it, do you mean they would have recommended that you have radiation, or that they would have recommended Tymlos? Sorry to be thick.
I think I have decided that I firmly do not want to do Evenity after reading an article in Science Direct about an 80 year old woman who developed narcosis of the jaw after using Evenity. The article was very graphic and very scary.
While I realize that this is rare, Evenity has not been on the market that long, and so it's hard to know what the incidence rate will be in 10 years. In addition the warnings about the heart and clots was enough for me to discard Evenity.
So that leaves Tymlos. My endocrinologist felt that the radiation I had on my cheek and nose for skin cancer was a cause for concern, but so are fractures. So I guess I am going to try the TYmlos and hope for the best. The nose doesn't have a lot of bone, and I only had radiation on one cheek.
I hope I'm doing the right thing.
Thanks for taking the time to help me. I've been reading your comments and like the idea of starting at a low dose. As Someone who is very sensitive to medication that was a relief to know I could do that!
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mary1951, I applaud your choice. Tymlos had only been suspected of cancer of the bone. The FDA warning has been removed and Tymlos is not longer suspect. It is also, in my opinion, one of two best medications for building strong bone.
I share your fears with Evenity and worry that time will reveal more complications with the heart. I also applaud your choice of mentors. Windyshores really is the best. just to be clear.
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@mary1951 just to be clear, I started at a half dose and had trouble with it, so I went down to 1/4 dose and then moved up. I ended up doing 7/8.
Evenity is a gentler anti-resorptive than bisphosphonates or Prolia. The cardiovascular risks are based on a study comparing it with aldendronate and it is possible that alendronate is slightly protective, The study comparing cardiovascular risk with Evenity versus placebo showed no difference. These are the Arch and Frame studies. I have atrial fibrillation w/the stroke risk that comes with that and had no issues on Evenity.
People seem to do really well on Evenity, anecdotally.
I did Tymlos and then 4 months of Evenity for the boost in bone building at the beginning. Then Reclast. My friend had -4.5 in spine and had amazing gains on Evenity only.
There must be a way to find out whether Tymlos is good after radiation on nose and cheek- but maybe someone has something to suggest! Can the endo and oncologist talk?
ps 1 out of 5 radiologists would recommend radiation for me- so I didn't have it!