Thoughts on Denosumab in my case

[Hope49823]

MO is suggesting Denosumab after my Dexa scan. Bone density normal in spine, osteopenia in right hip and osteoporosis on one part of left hip. I am wondering if with a -2.7 it is possible to control/improve with supplements and weight bearing exercises? What are you taking? Have added calcium.

The extreme potential side effects of Denosumab are unsettling. PC is locally advanced (seminal vessels) but negative PSMA Pet Scan for spread. On monthly ADT injections, radiation starting soon.

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T score interpretation according to the National Osteoporosis Foundation: T-score at or above -1.0 Normal T-score between -1.0 and -2.5 osteopenia T-score at or below -2.5 osteoporosis

REGION:

L-spine (L1-4): BMD (g/cm2): 1.139 g/cm2 , T-score: -0.7 , Z-score: -0.9

Left hip (Neck): BMD (g/cm2): 0.714 g/cm2 , T-score: -2.7 , Z-score: -2.0 Left hip (Total): BMD (g/cm2): 0.761 g/cm2 , T-score: -2.4 , Z-score: -2.1

Right hip (Neck): BMD (g/cm2): 0.888 ( g/cm2) , T-score: -1.4 , Z-score: -0.7 Right hip (Total): BMD (g/cm2): 0.876 ( g/cm2) , T-score: -1.6 , Z-score: -1.3

[JohnInTheMiddle]

Quick comment - getting calcium right requires a little bit of thinking and probably you need to take the right amount of vitamin D with it as well. I'm also taking K2 as well. Also exercise including just walking or trotting creates micro shocks which is a signal for bones to grow. And then weight lifting of course also signals bones to strengthen. The elephant in the room is how ADT suppresses not only testosterone but also estrogen. And osteoporosis is a consequence of suppressed estrogen. You can see the debates about using low-dose estradiol as estrogen add-back for this situation. (Don't confuse this use of low-dose estradiol with high-dose estradiol as a substitute ADT).

[Hope49823 in reply to JohnInTheMiddle]

Thank you for the advice.

[Tall_Allen]

Alendronate may be enough. Or possibly, estrogen patches with tamoxifen gel.

[Hope49823 in reply to Tall_Allen]

Thank you for these alternates to consider. I was caught off guard with the recommendation in office.

[bandgeek]

I was on 6 month injections of Prolia for 2 years with no adverse side effects.

Now on 6 week injections of Xgeva with no side effects. mCRPCa......too many bone mets to count. Spine and pelvic area. Good luck.

[Hope49823 in reply to bandgeek]

Thank you for sharing, best wishes for you.

[Gearhead]

I was on Xgeva for 3 years. Got nervous re ONJ, the probability of which increases the longer you are on denosumab (Xgeva ingredient)*. Bone scan showed mild osteopenia. Stopped Xgeva. But learned abrupt stop is bad idea. So started Prolia, which is a lower dose of denosumab. I'm still unsure re what is the best strategy here.

*One study (Nakai Y, Kanaki T, Yamamoto A, et al. Antiresorptive agent-related osteonecrosis of the jaw in prostate cancer patients with bone metastasis treated with bone-modifying agents. J Bone Miner Metab. 2021;39(2):295–301) reported 27% developed ONJ after 5 years of denosumab.

[Hope49823 in reply to Gearhead]

Thank you for sharing those details and that study…yikes. Best wishes for you.

[tango65]

If you have T values less than -2.5 your have osteoporosis.

You could discuss injectable treatment with denosumab, reclast , forteo or taking bisphosphonates by mouth with Boniva .

IMHO you should get the osteoporosis treated in the most effective way (denosumab or reclast) since you have prostate cancer and you could eventually need ADT for a while which it will make the osteoporosis worst.

[Hope49823 in reply to tango65]

Thank you very much for this perspective and how things may get worse

[Si52]

Be careful of taking calcium supplement if your blood calcium level is already within the normal range. I ended up with severe aortic stenosis, which I suspect was from the calcium supplement. Take care.

[Radars in reply to Si52]

I have t3b no mo dx 2014 finished treatment rt/ht 2016, my testosterone has never recovered and now have severe osteoporosis-2.5,4.1Lumbar spine, L4 t12 I have had 1infusion of reclast second one this April, I am on 6monthly psa checks 0.04 at the moment, prolia is also in the pipeline for me,crap with no testosterone but what can you do.

[Hope49823 in reply to Si52]

Thank you

[marc_andersun in reply to Si52]

That's a really good point. My calcium blood levels have always been in range, and I take supplements. But I think I'll stop all calcium supplements, and get my scheduled blood work done in 2 months... and then see what the level is.

[GARunner1 in reply to Si52]

I was told I needed to take calcium supplements because of bone mets, even though my Ca levels are normal. I asked my cardiologist if taking supplemental calcium would cause problems given my history of osteopenia and a moderately high calcium scan score. She said that would not be an issue. FWIW. Best wishes on the journey.

[Grandpa4]

Most of the approaches to osteoporosis that do not involved drugs like weight lifting, taking calcium and vit D even taking hormones are better at preventing osteoporosis than treating. If you fall on the hip right now there is a significant chance of death (30% in those over 80). It is also a very painful experience. The main side effect of denosumab is avascular necrosis of the bone in the jaw. It is not painful and does not lead to death. It is very uncommon at the regular osteoporosis doses but is more common at the cancer doses or after tooth extraction. It rarely happens in the first few years. To me it is a no brainer.

[Hope49823 in reply to Grandpa4]

Thank you for this perspective

[carbide in reply to Grandpa4]

I had osteonecrosis from Xgeva. It hurts alot! Your jawbone is dying.

this is osteonecrosis! pictured is dead jaw bone that came from my jawbone.

[Grandpa4 in reply to carbide]

You are right my mistake. I think the pain is better than the pain from a broken hip and my opinion stands.

[Tinkudi in reply to carbide]

After how much time of taking the xgeva did you have the necrosis

[carbide in reply to Tinkudi]

I was given initial Xgeva shot, then next in 6 weeks. Then a third, six weeks. Then adverse reaction started to appear first my right shoulder was in pain, I did not connect the pain of the shoulder with Xgeva.

Few weeks later by gums started to get very painful also showing visible signs of Osteonecrosis.

Hope this helps.

[Tinkudi in reply to carbide]

Thanks. That’s pretty early on. I thought it happens after some years of taking it

[wilcoxsaw]

To address your question directly, I have a dexa that showed a -2.7 and have done resistance training for 40 years as well as take calcium, k, strontium, magnesium supplements. None of those supplements prevented my dexa from showing my bone density numbers worsening once I was on ADT. It is very unlikely that doing just those things in your case will improve your bone density any significant amount.

I did Prolia for 18 months 5 years ago which did improve my bone density but then I developed a rash all over my body from that drug and quit. In November of 2022 after being off ADT for a period of time and then back on for a planned 12-month period again, a dexa showed my bone density had decreased so I started alendronate. I have had to cut that dose in half to 35 mg weekly and I have had to cut the weekly dose down to intermittent dosing because of the significant bone and joint pain and muscle pain that the alendronate causes me.

So my opinion based on my experience is the weights and the supplements will not be enough to prevent further bone density loss if you are on ADT.

[Hope49823 in reply to wilcoxsaw]

Thank you for the details and advice, couldn’t get a better like example of my situation.

[Derf4223 in reply to wilcoxsaw]

Trials have established that men with APCa on ADT (or worse yet, an ARSI like Abiraterone) stand _no_ as in zilch, nada, chance of keeping BMD level, without Prolia et al.

I second @wilcoxsaw's last sentence in the first paragraph above,, except strike "very unlikely" and replace with "impossible" . I also would add D3 to his mix. I'm on Prolia and my MO said that it pulls calcium from my blood and I have to take supplemental calcium, which I am.

[wilcoxsaw in reply to Derf4223]

I omitted I also take D3, and base the dosage on blood testing to keep my level at the high end of the normal range of 30-100 mg/ mL.

[Hope49823 in reply to wilcoxsaw]

Thank you

[Professorgary]

please research magnesium to calcium ratios. In my country 60% of the population is magnesium deficient which means your body can’t process calcium properly. This is a well documented fact yet I have never heard of any doctor recommending magnesium. My wife had a dexa scan a few years ago and doctor said she needed to increase calcium intake. My wife consumes plenty of calcium so I suggested she take a magnesium complex with vit d. Next scan showed improvement. I am one of the few who had side effects while on Xgeva and stopped after 4 months. Something to know about Xgeva is that it has a half life of 30 days which means when you get your 4th monthly injection you have a dose 187% on the first dose in your system and it takes 140 days to completely leave your system. God bless!

[Hope49823 in reply to Professorgary]

Thank you for this advice about magnesium

[delornut]

I've been taking Theralogix Prosteom pills which were designed by Urologists They are calcium pills comprised of 25mcg vitamin D, 500mg calcium, 100mg magnesium, 1.5mg boron and 50mg vitamin K. I take two pills twice a day. and have been on this since the start of my ADT with a cost around $55 for 360 tablets and are available by on line ordering. My last bone scan showed mild osteopina only in the left hip area.

[Hope49823 in reply to delornut]

Thank you for sharing this

[LakeT]

I choose Zoledronic acid (Aclasta by infusion) over Denosumab after discussing the pros and cons with my Endocrinologist.

[Hope49823 in reply to LakeT]

Thank you

[Tinkudi in reply to LakeT]

Can you please say more about why you decided to go with zoledronic acid

[Still_in_shock]

Remember you dont fall and break your hip. Your femur neck breaks from being weak causing you to fall.

[Hope49823 in reply to Still_in_shock]

Oof, thank you

[carbide]

I was given Xgeva/Denosumab, just because it is protocal. I ended up with osteonecrosis of jaws. lost my teeth. was in bad pain for 3 years. I feel, Not worth the risk.

Osteonecrosis lower jaw due to Denosumab/Xgeva

[Hope49823 in reply to carbide]

Wow that looks so painful, wish you the best in healing

[Tinkudi in reply to carbide]

For how long were you on it before it happened

[j-o-h-n]

Sorry for the late post.......... just passed out for a few minutes........

Good Luck, Good Health and Good Humor

j-o-h-n

[fluffyfur]

Female here with osteo. Prolia (denosumab) needs a relay drug once you stop it. Otherwise your bone loss intensifies. It needs to be taken for life. I'd start with a different choice. You might seek out an endocrinologist to assess your situation and go from there.

There are newer bone building drugs now like Tymlos or Forteo that may be an option for you. You take them for two years and then you can transition to other meds like alendronate.

[Hope49823 in reply to fluffyfur]

Thank you for sharing this!