To follow up on my previous post "What Now"
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?
Because you have multiple bone metastases that make the sites brittle, and they can fracture or compress the spine.
Thanks, you usually have pretty good insight. So, you think the fracture is a result of the mets, and not the drugs?
I have no idea. I haven’t seen your scans. Discuss with your doctor.
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
Yes, that is our medical system today...too busy for you!!!!! They are interested in your insurance coverage!!
My husband’s doctors have been amazingly kind and attentive.
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)
ncbi.nlm.nih.gov/pmc/articl...
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
The data are that zoledronic acid and denosumab reduce the incidence of skeletal events in patients with mCRPC with bone metastases.
Which one are you getting yourself?
I received a referral from my MO to see the endocrinologist about my low (and dripping) bone health.
I don't want to pay privately 550 A$ and waiting that the hospital arrange a consultation with the endocrinologist about my bone health.
I have to go to do some pathology blood examinations what the MO gave me before I see the endocrinologist.
I am since June 2018 on ADT Degarelix.
My first bone density scan was performed in September 2020 and the second one in Oktober 2022.
The probability that i will fracture my hip in a next 5 years is 1.2%.
It doubled since 2 years ago as it was only 0.6 back then.
no data for fosamax/alendronate? what about men non-metastatic but unfavorable bone density??
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 !!
Can you get a consult with an endocrinologist?
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.
Perhaps you should try some E2 gel to add density to your bones.
What's about low dose estradiol or estrogen patches?
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.
Who would prescribe that? I've read several posts on here from a guy who is using them, and is on vacation from adt. And it's been successful for him
I am talking only as an add on on top of the ADT for bone health.
I am not talking to use it instead of my Degarelix injections.
Patches are better as you can better control the dose.
Or maybe I am confused. I am not a doctor.
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 am on Prolia for bone health. I am osteopenic but no osteoporosis. Going in for another bone density test soon.
And I had to ask for the test first. Speak up. Tell the doctor what you want him/ her to do for you.
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!
Yes but you didn't give up and had your PCP do it. That's the way to do it. If you don't get what you want from one doc, get it from another.
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.
Timing of XGeva & Radium 223. 
Got PSMA SCAN Results-Now What?
Zometa
What is the cost of xgeva
What do you think?
