I've been on xgeva since initial treatment started in Jan 2022. PSMA in December 2021 detected bone mets (Dr. Spratt, Cleveland) Initial and subsequent bone scans did not show density issues. First and only radiation to bone mets was in December 2023, again with Dr Spratt.
My MO wants to continue xgeva for one more year, suggesting it will help bones strengthen after radiation. I was and still am hormone sensitive, so starting treatment with xgeva is questionable. Does it make any sense to continue with xgeva after sbrt?
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Amadeus71
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Radiation to bone metastases may prevent fractures and need no strengthening with Xgeva. Only take Xgeva if your DXA scan shows bone mineral density (T score) less than -2.5
I support TA's recommendation with my own real world example - I was exactly in your situation but continued with Xgeva until I had dental issues and happened to join this forum around the same time (about 2.5 years post-diagnosis). That's when I learned I had data-driven choices based on a DEXA.
Despite always being in the crPCa ADT+ category ("plus" second-line hormonals, "plus" Pluvicto, "plus" more radiation), my DEXA has remained good/okay for my age (now 56) and I have remained off of bone strengtheners.
I am not against these agents, but I think there is a time for them. Your time is not now based on the information given. - Joe M.
Thanks for the candid response, and sorry to hear about your dental issues. I like my MO. He got me through non-hodgkin lymphoma in 2017. But I disagree with him on continuing xgeva. Side effects are real, and potentially significant. I trust what TA has to say (we are beyond lucky and blessed to have him with us). His input and your experience have solidified my desire to stop xgeva.
I see my MO tomorrow for regular blood tests/PSA, and what would have been another xgeva injection. I'll let him know now is not the time.
Agreed - TA is the no-nonsense, unflagging voice of reason in this forum. He has the knack of making a short statement that forces a person to look at the real science behind a treatment. He is not without sympathy, but does not suffer opinions that flail about grasping at rumor-based miracles.
Finding an MO that is a partner in all of this cancery stuff is indeed critical. I can now have a dialogue with mine, while my first MO was more of a stick-to-the-checklist kind of caregiver. Not that this is bad, but I've learned a thing or two and want to be part of my care.
A parting thought, Amadeus. You are obviously and intelligent and resilient person, but I strongly advise stopping at two primary cancers! Good luck!
Wondering if this also applies for systemic radiation treatments like Pluvicto & RA-223; i.e., only needed when the bone mineral density is less than -2.5?
Can you change to prolia? You can't just simply stop Xgeva. We also have a bone health forum here on health unlocked. In which hospital are you now? Can you change MO? I understand that you like him but maybe you could find someone better for prostate cancer?
You can't just stop Prolia either, they are both Denosumab. They act by building bone mineral density, partially rebuilding the structure of the bone. Once you stop the effect wears off rapidly. Normally have to use bisphosphonates to help wean off denosumb.
It is worth looking into oral bisphosphonates or Zoledronic Acid for preventative bone care. They coat the bones like a paint job and can be stopped at any time.
You can use prolia up to 10 years and you can switch to Zoledronic acid if you can tolerate it but it looks like that if you plan to have a Lutetium PSMA treatment than prolia is better if you need it. Otherwise denosumab is much more kind on your kidneys and that is really important if you are considering Lutetium PSMA treatment.
Sure, I think we agree, denosumab if its needed. But the original poster doesn't need it since no bmd issues. The MO is using D in a preventative fashion, if that's the case maybe a short course of bisphosponates might be an option that provides some protection and an easy off ramp. Cheers.
That is correct, but who we are to take him down from a prescribed medication? He should find the answer from an MO working on him. I really can't say more than he should find s competent MO. I am really not a doctor nor I know his situation well enough. I could just recommend a second opinion. He should take this question of denosumab seriously. I really don't know.
One more think. If you believe that you may end up needing Lutetium PSMA treatment in the future it is better not to use Zoledronic acid at all. TA said once that Zoledronic acid would negatively impact the Lutetium PSMA treatment. Again, I am not a doctor but I would also take into consideration that fact. The best would be to talk to a competent MO and discuss with him all of this. I really can't suggest anything else.
Cold stopping denosumab results within a few months the loss of all bone density gains that happened while on it. Using a transition agent like a bisphosphonate seems to moderate but not entirely eliminate this effect. While on ADT we are utterly unable to even slow bone loss via diet, exercise, etc. If you are on a 6 month ADT plan it might not be worth worrying about.
Thanks for the insight. I've been on ADT for 2 years. My MO is recommending continuing ADT for another 2 years and Xgeva for 1 year. From what I read on this forum, many members are on ADT without xgeva.
Amadeus71, with those facts in hand and the risks of discontinuing denosumab, I'd go with my MO's advice. It is understandable to be a bit rationally concerned about SE and AE risks, but the reality is we have a bad disease and it advances exponentially while we dither. I happen to want very badly to be around for my wife and our daughter and grandson. APC + treatments = at least three chronic diseases, that is, APC (no duh), bone loss and sarcopenia. I am leaving aside dementia, diabetes and CV issues. It is for sure a wretched situation to be in -- the hydra of APC versus the SE/AE's of treatment. No one reading this chose to be in the Hydra club. The hydra chose us.
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Good luck!
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