I went ahead and had my PCP order a DEXA Scan, after Oncologist said "Not Necessary, you're on Xgeva and your psa is low". Dexa revealed Osteopenia. Hip and Spine is -1.5 and femoral neck is -2.3 (flirting with osteoporosis). I'm asking myself Why The F@@k have I been destroying my body with a drug ( XGEVA) that was supposed to prevent this? Is it time for a vacation from ADT, or time for a new Oncologist, or both?
Thanks, my scans were never discussed in detail with me. I got to read the report stating "widespread bony metastasis" and "innumerable lung masses" ...I've asked for details, but get the vibe that I'm annoying them when I inquire. Same as with the pain, numbness, and odd lumps under my left breast. But thanks, I'll keep pressing
In the absence of PC and castration treatment a T value of -1.5 is not treated and it is not usually associated with compression fractures of the vertebral bodies. You could consider to discuss the precise diagnosis of the vertebral fracture you had and if there is anything that could be done to try to control further skeletal events.
The scans that were never discussed with me were the ct and bone scans from original cancer diagnosis. The latest scans are under constant discussion with my pcp , as well as a spine specialist. As for the osteo, I'm more concerned with t value of -2.3 in the femoral neck. In my heart, I believe the spine fracture is a result of mets, or reduction in xgeva, as stopping xgeva and having spine incidents are common. (reportedly)
Did you stopped Xgeva before the vertebral fracture? Is the osteopenia progressing since starting Xgeva? If there is not a good response to Xgeva you could discuss changing to Zoledronic acid which is also effective to prevent adverse skeletal events in mCRPC.
I don't know when the Osteopenia began, as I never had a density scan until the xray revealed the fracture. I would have assumed a bone density scan at the time of metastatic diagnosis, was common practice. Xgeva was cut from every 30 days (for 2 years) to every 90 days, it was somewhere in the 4-6 months AFTER xgeva was reduced that the fracture occurred, I never felt anything defining, like a severe or sudden increase in everyday pain so I really don't know.
and Fosamax as option ?.....what was advised for my osteopenic sister......I'm also osteopenic and only advised to take high dose D to raise my very low D...maybe change when begin to do ADT? She has mentioned little/any problems with Fosamax/alendronate
Yes it could be used to treat osteporosis, T - 2.5 at least. Osteopenia is not treated unless the Frax score indicates a fracture risk of 10% or greater, if I remember correctly.
I was not given an official FRAX score, but I used the online calculator.....if I correctly answered the questions that are asked, the result was 10 year major overall fracture risk of 13%, and hip fracture risk of 7%...I'm sure my 'yes" answer re any fractures among related (parents, grandparents, siblings I believe?) upped my FRAX risk. Of course that result alone scares the hell out of me re the ADT part of radiation treatment !!
The -1.5 is not a big deal, but the -2.3 in the femoral neck is. Forgive me if we’ve been over this, but do you do any squats, leg presses, lunges, deadlifts etc? They are indispensable for lower body bone health.
I have been using estradiol gel (E2) which is basically the same as the patch. Please read some of my posts for more information. E2 is the main hormone in both men and women that maintains bone health. Many women suffer from osteoporosis after/during menopause from lack of E2. In men it is aromatized from testosterone which is greatly reduced while on ADT. An ALP blood test can give you some additional info about your bone condition.
the main problem I see with your care is not getting a bone density before starting Xgeva. Your bone density was likely as bad or worse before starting it but no way to know. Stopping these drugs suddenly is not a good idea and often triggers fractures.
I did ask if a dexa was warranted to see the health of the rest of my skeleton when I informed my Onco about the fracture, he said not necessary, as I'm on xgeva (though it's only very 90 days now instead of 30 days) and psa is steady. The dexa showed serious concern in the femoral neck!
Agree with Seasid above. Following a collapsed vertebrae while on ADT and Abi/Prednisone, I learned of the E2 option from other guys here. It sounded right for my situation, as my E2 was very low (<5). My oncologist was not in favor, but said he would agree if an endocrinologist approved. She was also hesitant but agreed to try it. So, I would suggest you try an endocrinologist, if your oncologist does not agree to it. It is a low dose estradiol transdermal patch (not the pill) that you would use IN ADDITION to your ADT therapies.
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