Decreased density but still "normal"

knittingPT

Hi All! My recent DEXA scan showed 5% loss in density compared to 2 years ago before I started letrozole. When I got the results, I didn't really ask many questions. Now I have a million. I'll talk to the doctor again soon but have questions for you all in the meantime.

If you are willing to share

(1) What dietary changes have you made to address bone density? Real food or supplements

(2) What exercise routine have you done?

(3) Did your rate of bone loss stay constant over time or did it worsen/improve? I'll be on Letrozole at least 3 more years and would really like to stay in "normal" bone density as long as possible. I don't know if I should expect the bone loss to get worse or stay constant or what.

(4) How often do you get DEXA scans? My initial one was 2 years ago. I wonder now that I have some bone loss . . . should I get it more frequently?

Anything else you'd like to share? Thanks!!!

ElaineTherese

Well, I'm afraid I'm not much help because two years after beginning Aromasin, I have full-blown osteoporosis. This occurred despite my consumption of two Caltrates a day, and swimming at the pool (daily during the summer, twice a week once school starts). So, now I'm on Fosamax, to help me rebuild my bone density.

My insurance will only pay for a dexascan every two years. So, it will be awhile before I find out whether the Fosamax is working. I am thinking about paying for an earlier dexascan, out-of-pocket. My insurance will pay for Prolia if Fosamax is not working, and I'm not sure I want to wait another two years to find that out.

Good luck, and I hope that you don't become me! You might want to talk to your doctor about Fosamax or Prolia now, to see whether you can do something to slow the loss of bone density.

knittingPT

I have been told that Prolia and Fosamax are not recommended until there is at least osteopenia. I think that is ludicrous . . . if I am headed that way, why not try to stop it? I guess it is also hard to see trends in whether or not bone loss occurs at a steady rate or if it plateaus, etc when we only get tests every 2 years. It's like everything else cancer related. Hurry up and wait!

peggy_j

knittingPt, Dr Weil has a new book out, Mind of Meds which I got from the library. His opinion is that osteopenia doesn't need to be treated by meds. I don't want to misrepresent his argument, so maybe you can track down the book and read what he says.

In my experience talking to the docs, all these drugs have side effects. You can't take them forever (there are risks with long-term use of bisphosphonates. Prolia can have a rebound effect, that once you stop it, you can have a rate of bone loss that's even higher than the baseline for 6-12 months).

To answer your other questions: everything I've read said it's better to get the calcium from food, not supplements; make sure you're getting enough Vit D. High impact exercise. There are books that can show you the types of exercises, but include things like jumping jacks. Typically they recommended DEXA scans every two years, unless the rate of loss is rapid. 5% in two years on that drug may be typical. I'm not sure how long it's been since you've started menopause but that will be a factor. (The closer to meno, the more bone loss, then it tapers off to 1-2% a year, just due to meno. If you choose to pay yourself, I think the fee isn't astronomical (less than $400. So not free but not the cost of a B-MRI.) Good luck. I share your frustration. From what I can tell, there aren't any terrific answers here, unfortunately.