dr Chris woolams

[Radars]

I have locally advanced prostate cancer t3b no mo finished treatment rt/ht and now I have severe osteoporosis because my testosterone has never recovered I have had 1 infusion of zoledronic acid for my bones, and now I have been reading dr Chris woolams bio-chemist on canceractive that bishonates make brittle bones worse is that true.

[Chugach]

7 years on Lupron has affected my bone health. I have broken ribs that won’t heal. Have your Doctor monitor your Vit D, if advised take a Vit D/Calcium supplement like Citrical. I also get a shot of densoumab every 3 months to help with bone health.

Buy hey - it’s a beautiful day and I’m above ground to see it!

~ Chugach

[Radars in reply to Chugach]

thanks, yeah I will be on denosumab next, I don't take a calcium supplement because they are a bit dodgy read allover that they can cause problems, I take 1000iu d3 with k2 mk-7 have you got severe osteoporosis, like me with back pain I must have fractured, I am at hospital on Tuesday for a spinal x-ray and blood test for calcium and my psa check.

[dhccpa in reply to Chugach]

When did you start the denosamab? How long ago?

[Chugach in reply to dhccpa]

I’ve taken it for a couple years with no problems. Consider adding Vit D monitoring to your blood work, on occasion my MO prescribed high dose Vit D to get my levels up

[dhccpa in reply to Chugach]

Thanks

[tango65]

Drugs such as zoledronic acid may be associated with fractures if used for a very long time.

pnas.org/doi/10.1073/pnas.1...

You could consider Denosumab instead.

If your osteoporosis is very severe you may qualify for meds which help to produce bone, such as as Forteo .

Denosumab and zoledronic acid reduce reabsorption of the bone. Zoledronic acid incorporates into the structure of the bone and has a long half life. Denosumab does not incorporate into the bone structure.

ncbi.nlm.nih.gov/pmc/articl....

[Radars in reply to tango65]

a lot of reading but zoledronic acid infusion is still better than nothing, some people have been on a long time are ok,it seems people are better first with bisphosphonates then denosumab. I have had 1 infusion last April.

[Kaliber]

I’ve had over 63 infusions of Zometa in the past 5+years. No obvious issues yet except for the administration SEs for a few days after infusion. ( Zometa pain train ). My new oncologist is cutting me back to twice a year and doing a bone density scan to see how my bones look.

😁😁😁

[Radars in reply to Kaliber]

that's ok ,but have you got severe osteoporosis.63 infusions they are supposed to be 1 infusion a year.

[dhccpa in reply to Kaliber]

Lot of infusions! Monthly?

[Kaliber in reply to dhccpa]

Yes , monthly.

[Kaliber]

I’m scheduling a bone scan to see how I’m holding up. I was discovered late, after aPCa had its way with me. I literally have Mets of some degree or other in every single bone joint in my body…. among other places. I’m in a wheelchair from knee , spine and foot cancer damage. Can only walk short distances before knee and foot pan becomes intolerable….even with opiate pain killers.

[Radars in reply to Kaliber]

sorry to hear that you have been suffering, my 6monthly psa check is tomorrow, I knew I would get osteoporosis without testosterone but what can you do except keep going best you can

[Kaliber in reply to Radars]

That’s exactly right, I can either do “ this “ or my alternative is hospice. People can learn to adapt and get used to about anything , after a while. It’s “ eye on the prize “ ….staying alive a little longer , time with my wife. That’s it, life has become pretty basic at this point. I’m comfortable mostly ( thanks to pain meds ) I’m ok for now. Stay’in upbeat, QOL’in …. Yayayy Yayahahaha.

❤️❤️❤️

[Radars in reply to Kaliber]

well done, and remember there is a lot of people worse off,and there are guys with Mets who have lived a good few yrs,when I was dx in 2014 finished treatment in 2016,I asked my oncologist how long have I got he said about 5yrs,I am still here,life changes but you have got to adapt and do your best, good luck.

[Kaliber]

that’s right …. There “ are “ guys here worse off than I am …some much worse. Makes you appreciate the difficulty they have to deal with. Yayahahahaya

❤️❤️❤️

[Atdabeach]

I'm surprised by the number of your zometa infusions too -- I had my first (actually branded Reclast, but I understand they're all basically the same, zoledronic acid) in October, and was told I'll get them annually. I had sacral insufficiency fractures, S2 vertebral body fractures, and osteopenia per Dexa scan. Apparently, in addition to the effects of no testosterone for the last year and a half, I have radiation damage to the bones in that area from my proton beam therapy (44 sessions). Since my infusion, I take supplemental calcium and Vitamin D, and eventually am gradually returning to workouts once the pain allowed. (I had low back pain, which eventually became severe sciatica all the way down both legs.)

Two thoughts in response to your post: maybe reconsider your aversion to calcium supplements, and MRI will show the extent of damage to your bones that might be hard to see on an x-ray. I know that the radiologist that read my x-ray in June didn't see any fractures, while the one that read my MRI in August saw marrow leakage from the fractures in my sacrum, and two bulging discs that may or may not have been responsible for my sciatica. My orthopedist was also able to point out radiation damage on the MRI (there was a difference in the coloration of the bones in the imaging). All in all, I'm a big fan of more complete information, and in this case it was critical to understanding the source of my (current) problem.

[Atdabeach in reply to Atdabeach]

Sorry, I confused the OP with a couple of the responses!

[Radars in reply to Atdabeach]

put me off spinal x-ray that it doesn't show everything, I tried adcal-d3 but stopped after 3days due to constipation, I have severe osteoporosis, -2.5 4.1lumbar spine, bmd at femoral neck 0.593 vfa superior end-plate deformity at t12 all because I have no testosterone so not good.

[SimMartin]

I haven’t read Dr Woodams but that some few people have bone fractures or jaw issues after many years of biphosphonates is well know but the incidence is low and so its a cost benefit calculation. I would say that the USA has had a reduction in biphosphonate usage since these scares has fallen and the number of hip fractures and spinal fractures has gone up !

The other issue is your scores … you’ve had no treatment up to now and your scores appear lower than mine when I started just before my RT and Zoladex (I asked for the DEXA myself as I had polio weakness and expected BMD not ideal now I’m 73). The results were not great but was told not that bad and even a bit borderline for fracture risk at hip. So I started oral weekly biphosphonates. Being described as not great but not that bad seems to point to you after years of low T as less of a major risk if you take action now that you seem to be expressing.

It’s a real downer and yes I worry about it as well , but with PCa it’s not simple choices aa with non PCa people and we have a lot to worry about. I try to look at the wider picture and ACTUAL data on side effects incidence in patient like me. There is a lot of scary stuff out there but when I worked in geriatric medicine in my 40s I saw too many disasters and deaths in elderly who had hip fractures from falls - so I’m very inclined to do what I can to reduce that risk - medication is one and being careful in how you move around and not take risks is another.

[Radars in reply to SimMartin]

thanks, but I have had treatment 1 reclast infusion last April, next day I was in hospital peeing blood urinary tract infection put me on a drip for the night and then sent me home with antibiotics which cured me no problem since, next infusion in April haven't made my mind up yet. but will probably have another one,I have asked for some trt but no,having no testosterone has caused more problems.

[SimMartin in reply to Radars]

I haven’t been down The infusion route yet but I hear from those who have that first time side effects are worse and second time improves.

Testosterone replacement is a whole difficult area and oncologists vary in what they think. Mine is anti as I had Gleason 9 although contained. But when I stop the hT in June or July if my T stays at very low level for 2 years I will definitely reassess. As you I am concerned about the bone density issues longer term

[petercraig2]

I've been on high level Estrogen patches as primary ADT for five years and recent bone scan show no bone loss at all. Both PSA and Testosterone are below measurable values so works very well for me. Not sure if it's related but I take Vitamin D in 10,000 iu capsules daily.

Hope this is useful

Best of luck

[Scoofer33]

I was told benefits of denosumab (Xgeva) far out-weighed risk of Medicine-Related OsteoNecrosis of the Jaw, or MRONJ. They told me my risk was only 1.8 percent. I got MRONJ, sections of gums started disappearing and, so far, I've lost 2-1/4" of my left lingual jaw and two molars. Beware: if you are one of those that happens to be affected by the side effects of resorptive medications, like Xgeva, your risk of MRONJ is 100 percent!