Hello to all. I continue to find your posts enlightening and supportive and thank you for them.I am presently on Lupron and Apalutamide and have recently completed a 6 x 6 (36) Gy treatment regimen to my prostate. I had a bone density scan last year and my 10 year fracture risk is moderate (10 - 20%/10 years). My Osteoporosis specialist has recommended Zoledronic Acid or Prolea and says that necrosis of the jaw is unheard of in the subject population at he levels I would need. I wonder if any of you could weigh in and let me know what you have experienced and why you chose one of those or Fosamax or Actomel.
I am considering enrolling in the SABR-COMET10 trial (clinicaltrials.gov/ct2/resu... to treat my metastatic lymph nodes. Any thoughts or comments on that? I am coming up to one year since diagnosis and feel like there are many decisions yet to be made.
Thanks
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Squirrel71
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1) When you say "lymph nodes," do you mean pelvic lymph nodes. If so, a recent study at Mayo suggests that treating them all is more effective than spot treatment:
2) You shouldn't take any kind of bisphosphonate until you actually have osteoporosis. The risk of jaw necrosis increases with time taking it, so there is no point taking it until you need it. Estrogen patches and weight-bearing exercise may be all you need for now.
I ask because I've been on Xgeva for a year, although a bone density scan in September (my first ever) said bone density was normal. Calcium levels are normal as well.
If you take the estrogen patches Allen mentioned you will never need bone protecting meds. Therefore you will never get necrosis of the jaw.
You wrote: "PSMA/PET scan results showed no distant metastasis but found regional and extra regional lymph node Mets (mesorectal, a tiny right external iliac lymph node, common iliac nymph nodes and nodes in the obiturator fossa) staged as N1a disease."
These lymph nodes are in part outside the standard radiation template. So I would try the COMET-10 trial. This is on my TODO list in case too many mets should show up on a PSMA PET/CT.
Appreciate your comments. Due to my physiology, they thought it was too risky to treat all my pelvic lymph nodes so I thought a more targeted approach might be worth giving it a go (if I qualify). .
Hi GP24. I am still waiting to see if I qualify and am randomized to participate in the SABR-COMET 10 trial but I appreciate your suggestion and will look into Lu177 if I don’t get in. Thank you. Joseph.
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