ADT and bone loss lost opportunity !?

[SimMartin]

there is /was so much to think about when I got the Gleason 9 diagnosis after 18 months of being told don’t worry it not high risk and so had failed HIFU. Stupid of me !

I got, with great difficulty a DEXA scan one month after starting LHRH agonist goserelin. No one told me I needed it, and given my polio as a kid I probably was likely to already have some osteoporosis risk at 73. And yes I had lumber osteoporosis and osteopenia in my hip and neck of femur.

With all the other stress and issues and struggle to get the right oncologist, I didn’t see a rheumatologist and start the oral biphosphonate until couple of weeks after radiotherapy. OK I should have been more on the ball - I blame my lack of oushibg the syste because now just finished 18 months of hormones and the DEXA shows I now have osteoporosis of total hip - this is down from T -2.4 to T -2.5 (loss of 6.5%) also neck femur down and lumbar down from T -2.8 declined to T -3 (loss of 2.9%) that after 14months on oral biphosphonates

I can’t exercise (polio etc) I walk very little but try as much as I can (physical advice is poor as little knowledge of polio) so essentially need to rely on eating well and maintaining calcium intake (I may have skipped a bit there as maybe not quite 1000mg especially at the beginning). I always had very good Vit D and take K2 (had taken years prior to Dx with PCa)

I’m now being offered infusion alondronic acid and another DEXA in 2 years ! but hey that is the same med just more convenient. So where is the evidence that it will work!? am trying to get bone markers done - again never mentioned and now hard to get it seems not routine in U.K, attempting to pay for it now.

what is the regime and useful markers in other places to check what’s happening and help know if the meds are helping? Maybe they are and the bulk of bone loss was the months at the start when I had no biphosphonate cover ? Can the bone marker tell this ?

Given my polio and being a wheelchair user outside the house and low muscle (118lbs - 5’4”) I have to do small targeted exercise but essentially I rely on meds, diet and hoping to get some Testosterone back to help before I crumble away !

Advice ? Thanks and again apologies for my verbosity and perhaps rambling style. !

[babychi]

Gleason 9 and not high risk?? Your Urologist needs a dose of something!! A heated pool might help. I have four titanium implants to hips and knees and warm water walking does wonders for my muscles. I need a shoulder reconstruction so cannot swim. Great outcomes to you🌻

[pe43]

Can you get denosumab in the UK for osteoporosis? It's very different chemically from a bisphosphonate, better in some ways but may be more expensive.

[janebob99]

Have you considered transdermal estradiol therapy? It is well-known for causing bone growth in men with prostate cancer. And, it minimizes most of the bad side effects of Lupron ADT.

BMD vs time