My Onco says he only looks at the PCa, bone health is not his department, I say he couldn't be more wrong.

[CSHobie]

I am now 54, dx Dec 2019 PSA 160 and up to 300 by March 2020. Extensive bone Mets. Started ADT with Zytiga and Prednisone, marvelous results. PSA down to 0.03 in 8 months, and has stayed very low since . Onco recons everything is going great, disease under control, no further action is needed, just keep doing the current treatment.

However over time my bone pain and skeletal pain is going up and up. Bone scan and CT doesn't show much change, which is great. Don't get me wrong,I thank God for those good results.

But why the pain? Dexa scan shows up to 15% bone mass loss over the last year in some areas. It's just my theory about the link with pain, but digging around I learned that: BONES ARE EVERYTHING.

Bones and muscles are so interlinked, it's true to say bones preserve muscle mass, just like muscles preserve bones.

Here is an interesting presentation on this topic. Gets a bit technical, but well worth watching.

youtu.be/uhXosx7fk_0(Not working as expected?)

Onco's who think like mine has barely a grip on the tail of this disease, not the throat he thinks he has.

For me the take home message is: Bone agents like Bisphosphonates and Zoledronic Acid needs to brought into the picture, much sooner. Even before Chemo. Without bone strength you can't preserve muscles. And obviously without bones and muscles we die.

[mrscruffy]

Time for a new Oncologist. Mine has me taking bone tests Friday. My care team also includes an Endocrinologist and Psychologist

[CSHobie in reply to mrscruffy]

Looking at the hospital website, the team theme exists. But due to Covid people just didn't feel like doing a good job anymore.

So I do have a ( dysfunctional) team, but if the main dude doesn't think bones are his department, then I guess I need a better Psychiatrist to give me something to believe this true. Lol

[Cooolone in reply to CSHobie]

Due to covid? Nah... That mentality existed long before! Finding your team is like getting custom fitted shoes, you'll only know it's right once you slide your foot in it!

[Hidden]

I agree with you . That Dr. Should be looking out for your all important bone health . After IMRT ,lupron and another and four years of losing bone density i was in osteopenia and put on prolia . I had no bone metzs however …I’m no doc but you should be on bone meds and simple bone nutrients . I too was dxed at just 53 .. nightmare my friend . I’m lucky to be here at 61 … Lucky to be alive now! Hang in there !

[Hidden]

Morning CSHobie

Not sure what time it is with you, but it’s twenty to 3 in the morning here in France.

Our new urologist, after our first appointment with him 2 weeks ago, sent us for a dental x Ray yesterday, so that he can prescribe a bone strengthener.

[Tall_Allen]

FRAX is a good indicator for bone strengthening agents:

sheffield.ac.uk/FRAX/tool.a...

[HopingForTheBest1]

Have you considered adding a palliative care doctor to your team? He/she will help control your pain.

Adding high calcium foods to your diet can help improve bone mass.

[CSHobie in reply to HopingForTheBest1]

Thanks for the replies.

I do have a Palliative Dr, she doesn't really believe that I have pain, because the Onco says my disease is under control, everything is good. But my pain is not under control.

I tried a few times to get Estrogen patches, but Onco refused, he said there's no proven benefit.

I have an appointment coming up next week, so I will show him these studies and links you all provided. Thank you for this amazing group, sorry that we are all here, but we are stronger together.

[David1567]

I think you are correct in your assessment of bone health and if your oncologist doesn’t feel the same, maybe look for another one?

My husbands case is so similar to yours, only Dx’d in Jan/22 at 54 yrs, has had 2 shots of Denosumab (xgeva) and a fellow Canadian 🇨🇦 also (Toronto area). I was assuming this is part of the standard of care here? My friend recovering from breast cancer with Mets was put on zometa right away also and has been on it for 5 years.

Our oncologist is young and head of her department. She has already given him 2 bone scans, 1 after chemo was finished. He had 6 places with Mets initially (and lymphs/liver) and look like they have mostly cleared up or put to sleep (as the MO explained it) she also said the monthly /6 weeks shot of Denosumab would protect from further Mets and strengthen weakened bones.

Hoping for your continued treatment success and less bone pain.

Take care, Tracey

[Foldem]

I get zoledronic acid Infusions quarterly and take Phospha daily.

I would change doctors if it’s at all possible.

[mrscruffy]

Hahahaha no shit

[Gl448]

I just started ADT two months ago. I have several mets in pelvis and spine. I’m awaiting bone biopsy, but the MO has already said she’s putting me on XGEVA for bone strengthening right after that scan. My RO also checked to make sure I was getting something. Even the Uro mentioned it before referrals to oncology.

I don’t like your MO attitude, maybe it’s not his area in his mind, but he should be concerned and referring you to someone who’ll own it.

[CSHobie in reply to Gl448]

You seem to have a good Dr there, all the best