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Breast cancer patient also with osteoporosis: AI, Prolia and Reclast

Posted by bunnymoon @bunnymoon, Apr 4 10:07pm

Im new to this site. Please forgive if this topic addressed previously. I am to start an aromatase inhibitor (letrozole) but I have osteoporosis. Plan is for me to start every six months Prolia shots. Of note I’m 58, postmeno, was on HRT for menopause symptoms and osteoporosis. The HRT didn’t help my bone density.

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gently | @gently | Apr 7 12:17pm
In reply to @windyshores "@gently I worry that the effects of sclerostin suppression are not adequately studied. Most studies are..." + (show)
@windyshores

@gently I worry that the effects of sclerostin suppression are not adequately studied. Most studies are on cardiovascular effects and those studies showed no difference in risk between Evenity and placebo, and small difference (but significant) between Evenity and alendronate (which might be because alendronate has a positive effect).

But sclerositin is throughout the body, including central nervous system, joints/cartilage....I am having long complicated weird dreams that have no connection to daytime concerns. In some ways that concerns me more than joint pain.

For breast cancer, I was told Reclast , and my cousin is on Zometa- both zoledronic acid. I wonder if doctors are hesitant to prescribe bone builders like Forteo, Tymlos, Evenity because they can't be given when metastasis is possible. Maybe in early cancer this is still an issue if/when cells are still wandering around-???

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At least the restricted plasma level of the bone-derived protein, SOST, is correlated with reduced brain Aβ load in a cognitively unimpaired older adults. https://www.ncbi.nlm.nih.gov/pmc/issues/427415/
My concern is cardiac valves.
I think the reluctance to prescribe is entirely the evidence from rats predisposed to cancer. The registery that allowed the elimination of the black box would have to have been skewed, who would prescribe and who would take the risk. Mostly white women of our age. But no mechanism of action has been proposed.
The internet is rife with the now retracted warnings. I wish at least the universities would delete the disproven information from their sites.
I spoke with an endocrinologist last week who was not aware of the change for Forteo and skeptical of its existence.
I would so love to hear your dreams.

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gently | @gently | Apr 7 12:25pm

"Atypical Femoral Fractures: Atypical low-energy or low trauma fractures of the femoral shaft have been reported in patients receiving EVENITY®. Causality has not been established as these fractures also occur in osteoporotic patients who have not been treated.

During EVENITY® treatment, patients should be advised to report new or unusual thigh, hip, or groin pain. Any patient who presents with thigh or groin pain should be evaluated to rule out an incomplete femur fracture. Interruption of EVENITY® therapy should be considered based on benefit-risk assessment."
I'm pretty sure you've alread seen this.

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dlmdinia | @dlmdinia | Apr 8 9:33am
In reply to @patclem "So glad your oncologist explained things to you. I was told to start Reclast by the..." + (show)
@patclem

So glad your oncologist explained things to you. I was told to start Reclast by the PA,I decided not to start at the time. Have since changed my follow-up cate locally and oncology nurse referred me to my primary because oncology does not order osteoporosis meds. Now my primary is leaving and I have to start back to step one. It is mind boggling that I cannot find continued care from any physician. From my research I am leaning towards Evenity, Tymlos or Forteo. Anyone tried these?

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I'm on Prolia so I can't answer your question (although next month I plan on asking my oncologist for an alternative). What I find interesting is that the oncologist won't treat for osteoporosis. My case is somewhat different in that I'm at the osteopenia stage, and my primary care doc won't treat for that because Medicare doesn't cover it unless you're on AI's. I'm on my 4th oncologist (long stories there), but all 4 just assumed treating my osteopenia. It's not the Healthcare systems because they're in 3 different systems. Weird.

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