Greetings everyone--good news---PSA low as it has ever been, but longtime hormone therapy (12 years) has resulted in osteoporosis ---- -2.5 bone density---onc is recommending xgeva---active guy 56 yrs old--not ready to be an old man---I know there are some long-time survivors here who have benefitted from hormone therapy--anyone else had the same issue?
Sam
I have osteopenia and I receive an Xgeva shot every 6 months. No problems from it. I try to do weight bearing exercises which helps the bones. I also like ice cream which is good for bones. Wait, maybe that one is not yet medically proven.
Maybe consider low-dose transdermal estrogen, too?
it is an effective treatment for osteoporosis. Before starting , you have to be sure your teeth are OK. You do not need root canals, extractions or implants, since Xgeva is associated with a complication called osteonecrosis of the jaw. The incidence is low around 2-4% and it usually happens in patients treated with Xgeva who develop teeth infections or need extractions, implants or other surgical dental intervention.
12 years until osteo that’s pretty good . I went into osteopenia at four years of adt . They started ,me on prolia ( a diluted edition of Xgeva) last year . Did you have bone mets ever? Is that why Xgeva.??
I receive a once per month xgeva shot. I have been getting xgeva for the last 4 years. No problems. Hope this helps.
Thanks guys. I knew this hearty group would have some good advice/answers. I did have bone mets, but apparently SBRT zapped them, as bone scans were good last time....onc was alarmed by a cracked rib that I had no idea about. Teeth are in good shape, get twice a year cleanings, two cavities my whole life and I see dentist before first scheduled xgeva shot..managed lupron and zytiga well..just worried about activities..running, twisting, mtn biking etc.
In 2015 I’d just turned age 55 and was diagnosed with Gleason 9 stage IV metastatic prostate cancer. I received quarterly injections of Lupron and Xgeva. I had no dental issues to begin with, yet after 18 months I began to develop a painful sore on my tongue. At this point I was no longer hormone sensitive. My gums were dissolving away leaving what I thought was a bone spur, which carved into the side of my tongue. I began waiving Xgeva injections and my oncologist soon approved of my actions and took me off Xgeva entirely. An oral surgeon diagnosed me with Medicine-Related OsteoNecrosis of the Jaw (MRONJ) and removed a 2” wide section of the lingual side of my mandible leaving molars #’s 18 & 19 hanging inside my mouth, suspended only from the roots embedded in the buccal side of my jaw!
Being on ADT2 (Zytiga) without Xgeva to strengthen my bones has left them very vulnerable. I had a slip and fall accident in my own home on 05/04/2020 which admitted me to the hospital for a week.
I had no success from the Epidural Steroid Placement they completed on my spine.
I was still in excruciating pain when I was discharged to go home to wait a couple weeks for spinal surgery on my L5-S1. I did not receive as much relief from that operation as I’d hoped and was discouraged to learn from the neurosurgeon that I was not a candidate for Spinal Fusion surgery as my bones were “mush”. I consulted Dr. Jeffrey Wang, the chief of USC Spinal Center for a second opinion and additional testing. He’s ordered bloodwork to determine if the post-operative steroma is complicated with a difficult to diagnose infection. He’s also ordered a DEXA scan this Friday so we can see if I’ve developed osteoporosis!
Thanks for the response Scoofer. I am sorry to hear of your difficulty. Please keep us updated.
I was diagnosed with Osteoporosis in February from a Dexa Scan. My Rheumatologist put me on Prolia 60 mg every six months, starting in April. No problems so far with Prolia. I'm also taking supplements from Osteonaturals: OsteoStim, Osteo Collagen-Pep, and Osteo MineralWhey. That plus trying to get total intake of Ca to 1200 mg with diet and supplements using a liquid 2:1 Ca/Mg supplement from Integrated Therapeutics and separate Zn and Boron supplements. Shooting for 1200 mg CA, 600 mg Mg, 50 mg Zn and 9 mg Bo. Best wishes for maintaining bone mineral density.💪🏋️🦷
Good to hear your success on HT but not sure why you weren’t on xgeva long ago . Did you have annual bone density tests?
I was osteoporotic after 12 months on Lupron. Been on Prolia ever since. No obvious problems from it
Quoting you..."56 yrs old--not ready to be an old man"
Many of us taking these F-ing hormones were not ready to be an old woman..... but here we are.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 08/06/2020 7:10 PM DST
Samahieb, monte1111, and j-o-h-n, thank you for your encouragement. When a small part of ones sufferings touches stalwart advanced prostate cancer patients like yourselves one realizes something fairly noteworthy has been endured. God has given me and my family what we’ve needed to get through these experiences but not one minute before we’ve needed it. I guess that is the exercising of our faith, right?
P.S. j-o-h-n, your joke about us becoming old women was spot on! Thanks for your usual levity. It’s much appreciated!
Samahieb, you asked me to keep you updated on my situation regarding your recent post topic. I received the results of my DEXA scan and was told my rating was -.08. You may wonder what that means. I was told that the gold standard for bone strength is that of the typical 19 year old. This is rated between +1 and 0. The next standard deviation from optimum bone strength is rated 0 to -2.5. This degree of weakness is considered osteopenia. The next standard deviation is between -2.5 to 5.0. This degree of weakness is considered osteoporosis. So my rating of -.08 means that my bone strength has diminished only a third of the way through osteopenia. BTW, my sister’s rating of -4.7 means that her bone strength has diminished 2/3 of the way through osteoporosis.
Xtandi, Xgeva, and Dental
Xgeva and deep clean.
Xgeva: Helping or hurting?
Xgeva for bone metastisis
Starting xgeva next month
