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@windyshores Wow, I didn’t realize you also took Letrozole for 5 years. I’m only 7 months along in my 5 years, and struggling with sleep, anxiety and various body aches. The worst part of Letrozole, for me, is the idea that my serious lumbar spine 5-score will be exacerbated by it.
Btw, you’d asked me why my bone specialist wasn’t prescribing Tymlos or Evenity to try to build bone. She replied recently and said she didn’t think my oncologist would allow either, but suggested I ask her if she’d be okay with me taking Evenity while on Letrozole. Is this worth considering? I’m also terrified of side effects from Evenity as well — the Letrozole has really impacted my mood and sleep, and made everyday functioning more difficult. Did you take Evenity during your AI years..?
Thank you!!
Replies to "@windyshores Wow, I didn’t realize you also took Letrozole for 5 years. I’m only 7 months..."
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@risagee I had osteoporosis already when I started letrozole. My endocrinologist did not want to prescribe the usual Reclast due to afib (since disproven as a risk). My oncologist was concerned about my bones and had me stop at 5 years. I did a test called the Breast Cancer Index to see if there was benefit to doing 7-10 years and it came out a flat "no" though my risk of recurrence came out as high. I am 9 1/2 years out now.
Reclast is used with aromatase inhibitors to prevent osteoporosis and is thought to have some function in preventing spread to bones. It is used for metastatic breast cancer that has gone to the bones as well.
I am not sure why Tymlos or Forteo was not suggested but I was at the time unable to tolerate Forteo. Evenity was not available yet. Perhaps at the time there was concern that anabolics might increase the chance of spread, but the thing is, with hormonal cancers, our risk goes up not down over time. And these drugs now are known not to cause bone cancer, at least in the years they have been used.
I did lose a lot of bone density on letrozole especially in the first year. The rate of loss decreased for years 2-5 but I still lose some.
Thankfully, after 2 years Tymlos, my spine is back to borderline, better than before letrozole, but I had some fractures during COVID before I got on Tymlos.
Did oncology discuss Tamoxifen with you at all? I have no idea what bone meds could be added to that. I do know some do Tamoxifen due to osteoporosis but my docs never mentioned it and if they had, I might have still chosen an AI for its benefit for my grade 3 cancer. I really didn't understand what fractures do to quality of life, and of course we don't have symptoms from osteoporosis, so my focus was on cancer.
I hope you can talk to both an oncologist and an endocrinologist about this. I don't know if Reclast is the best approach in your situation with concerning DEXA scores and an aromatase inhibitor. I would actually be more concerned about bones- something I did not understand at the time. I am hoping you can do a bone building drug like Tymlos, Forteo or Evenity. Please let us know what the docs say- important info for anyone dealing with this situation and there are many of us!