Xgeva with zytiga, orgovyx and prednisone

[Amadeus71]

Newbie to the group...curious for your experiences with Xgeva. I started it right away along with the other meds when my treatment began about 12 months ago. Some Xgeva side effects have me very concerned, such as potential for ONJ, broken femur, and then potential for multiple vertebrae fractures if/when treatment ends. Understood that everyone is a little different. Thanks in advance!

[Poowater]

Have been on Xgeva for over a year. No problems. You should be on Calcium plus Vitamin D.

[Amadeus71 in reply to Poowater]

I'm on D, not calcium

[Poowater in reply to Amadeus71]

The standard of care is also calcium.

[Tall_Allen in reply to Poowater]

What the prescribing info for Xgeva says is "Administer calcium and vitamin D as necessary to treat or prevent hypocalcemia.. . Monitor calcium levels, throughout Xgeva therapy,especially in the first weeks of initiating therapy, and administer calcium, magnesium, and vitamin D as necessary. ." One should monitor plasma levels of both and supplement if necessary.

pi.amgen.com/-/media/Projec...

Zometa says ,"Coadminister oral calcium supplements of 500 mg and a multiple vitamin containing 400 international units of Vitamin D daily."

accessdata.fda.gov/drugsatf...

Be careful about supplementing calcium if not indicated by low calcium levels, as it may make PCa worse and may have other deleterious cardiovascular and renal effects. Excessive Vitamin D intake has been shown to weaken bones.

[Poowater in reply to Tall_Allen]

Many thanks.

[85745 in reply to Tall_Allen]

I always take vit K2 with vit D, K2 insures calcium gets transported into the bones also take boron . Boron is good for bones, and studies have shown can lower psa levels, Research Boron and Prostate , life extentions has a good article. Fermented foods have a good amt of k2.

[Tall_Allen in reply to 85745]

Life Extensions is one of the biggest bullshit producers on the Internet. Do you think it's a good idea to counteract the effects of one useless supplement by taking another useless supplement? The only one who benefits is Life Extensions.

[85745 in reply to Tall_Allen]

How about reading written articles from med journals on the same topics all showing the same findings. For that matter the LE article was backed by source references , maybe just pull up the reference material .

[Tall_Allen in reply to 85745]

I once checked their sources- they lie. It's not only important to get info from peer-reviewed journals, it's important to understand how to interpret that info. To the casual observer, a mouse study, a retrospective study, and a randomized clinical trial are all the same. They are not.

If you want to begin to understand what is Internet garbage and what is gold, read this:

prostatecancer.news/2022/07...

[85745 in reply to Tall_Allen]

It's only information not messengers how you or anyone wants to take it or not is a matter of choice .

[Tall_Allen in reply to 85745]

If you believe in science, it's not a matter of choice. There are actual rules. You choose pseudoscience at your own risk:

prostatecancer.news/2021/07...

[85745 in reply to Tall_Allen]

Rules; really who makes the rules and who over sees those who make the rules. Sorry I believe in freedom of all informatio. Look you replied back I respect your comment , Thanks I think we're all good , enjoy

[Tall_Allen in reply to 85745]

Scientists make the rules (the rules are described in the first article I linked). That was the innovation that began with the Scientific Revolution in the 16th century. You can reject science, but it is usually bad for one's health to do so. It is definitely not "all good."

[JWS13 in reply to Poowater]

how many mgs of calcium and of d? special kind of calcium or "D'

[Poowater in reply to JWS13]

1200 mg calcium plus 1000 IU VitaminD

[Tall_Allen]

Why Xgeva so soon? Poor DEXA scan results? Big metastases worrisome for fracture?

[Amadeus71 in reply to Tall_Allen]

None of my doctors has clearly said that there was any significant concern for fracture. One second opinion onco had a similar thought as you, saying it might be early in the process for xgeva.

[Tall_Allen in reply to Amadeus71]

Side effects such as the ones that concern you increase with increasing duration of therapy. There is no indication for Xgeva until castration resistance, and even then, only if reason for concern.

[Amadeus71 in reply to Tall_Allen]

Wondering now if I can stop yhe xgeva, and start again if/when resistance kicks in. I have an onco appointment on Wednesday. I'll let you know what he says.

[Poowater in reply to Amadeus71]

You must stay on Xgeva for life.

[Amadeus71 in reply to Poowater]

Thank you

[London441 in reply to Amadeus71]

Xgeva comes with big risks obviously, despite the benefit. Risks that increase over time are particularly concerning. I wouldn’t make a firm decision to take it ‘for life’ for that reason.

Xgeva or not, what you must do for life if you want to maintain your bone health is lift weights, especially with your lower body. Hopefully you do already.

[Tall_Allen in reply to Poowater]

Not necessarily. Some doctors don’t believe in giving it more than 3 years at a time

[JWS13 in reply to Poowater]

why for life?

[GoBucks in reply to Poowater]

Why stay for life?

[Amadeus71 in reply to Amadeus71]

Quick update after meeting with MO today - his original plan was Xgeva monthly for 2 years then drop down to quarterly or semi annually. I've been monthly for one year to this point. We agreed to go every other month for the next year. PSA is still detectable at 0.07 after 0.09 2 months ago. Adding metformin to the mix.

[Golfnerd in reply to Tall_Allen]

I understand that there are risks associated with Xgeva therapy(ONJ and AFF). And I am aware that these risks increase with duration of Xgeva therapy. I also understand that the recommendation is to not start Xgeva until mCRPC. What I don't understand is why. Xgeva works by preventing excessive RANKL binding to osteoclasts and thus prevent excessive bone resorption. Why would extensive bone mets in mCSPC (vs mCRPC) not also benefit from Xgeva (except for the risk of ONJ, AFF and SRE)? Not sure there are any studies addressing the OS, PFS or QoL with either approach. Can you shed some light on this?

[Tall_Allen in reply to Golfnerd]

There are 2 reasons that men with PCa get bone fractures, pain and spinal compression:

(1) It can be because long-term use of ADT lowers bone mineral density (BMD) causing "fragility fractures."

(2) Or, it can be because growing bone mets create brittle bones that easily fracture.

Neither is a concern for men who are still hormone sensitive because (1) not enough time has passed to deplete BMD (it should be monitored every couple of years with a DEXA scan), and (2) bone overgrowth has been stopped by other therapies (e.g., ADT, 2nd line hormonals, chemo).

Zometa did not increase PFS or OS in 2 major trials among newly-diagnosed hormone sensitive men. However there was a benefit with the addition of Celebrex in newly diagnosed metastatic hormone-sensitive men.

[garyjp9 in reply to Tall_Allen]

T_A, re "Neither is a concern for men who are still hormone sensitive because (1) not enough time has passed to deplete BMD." While still hormone sensitive, I suffered an L-4 compression fracture after 17 months on ADT/Abi/Pred for reason (1); doctors ruled out (2). I was osteopenic when measured 6mos after treatment started, but I was not on any bone strengthener until after the fracture.

[Tall_Allen in reply to garyjp9]

Good reminder to get a baseline DEXA scan. If one is osteopenic to start, maybe they should give a bisphosphonate (e.g., alendronate). Xgeva is very extreme for that.

[garyjp9 in reply to Tall_Allen]

Yes, my doc never mentioned it, and I was too ill-informed at the time to pursue it. Even after the result came back for osteopenia, I was not given a bone strengthener until after the fracture.

[Derf4223 in reply to Tall_Allen]

Prolia can help inhibit bone mets

Does denosumab have a role in metastasis prevention? - Naturenature.com › ... › research highlights

by S Payton · 2012 · Cited by 2 — In experimental models of prostate cancer, osteoclast inhibition has been shown to prevent metastasis. Thus, it might be predicted that using ...

Of course this is not a double blind randomized controlled trial.

[Tall_Allen in reply to Derf4223]

A lot happened since 2012. There were two major randomized clinical trials, STAMPEDE and TROG RADAR that showed Zometa alone had no effect in inhibiting bone metastases. It is very doubtful that denosumab (Prolia or Xgeva) can inhibit bone metastases when Zometa does not.

[RyderLake1]

Hello,

I have been on Prolia aka Xgeva for nearly ten years. I am on a maintenance dose that requires an injection into my upper arm every six months. No serious side effects. When I started with Prolia, I too was worried about osteonecrosis of the jaw (ONJ). I told my dentist but he didn’t seem overly worried. I was told at the time by my family doctor and dentist that my chances of getting ONJ were very slim (about 1%).

[Gearhead in reply to RyderLake1]

While Prolia and Xgeva are both denosumab, I believe that when each are administered at the recommended doses and frequencies, the patient is receiving much more denosumab with Xgeva than with Prolia. Please correct me if I'm misunderstanding this.

[Amadeus71]

I'm on monthly injections now. Once every 6 months sounds much better.

[Gearhead]

I researched trial and post-trial reports on ONJ frequency associated with denosumab. I found a lot of variation and inconsistent ways of reporting ONJ risks. But one thing is certain: As TA stated, the ONJ risk increases the longer you take denosumab.

I took Xgeva (injections every 3 mo) for three years and then stopped because of ONJ concerns. Got a bone density scan, which indicated mild osteopenia. Soon after discontinuing Xgeva, I fractured the second metatarsal bone in my left foot. (not clear if there was any cause-effect here). Also got concerned about Xgeva stoppage rebound effect. So now I'm on Prolia (injections every 6 mo). I think I'm getting substantially less denosumab now with Prolia than I did with Xgeva. Obviously, I don't have all the answers.

[NevsMates]

I have a Prolia injection every six months. The ONJ issue comes into play if you are having teeth removed. I had one removed sixteen months ago and the dentist didn't seemed to concerned. However, if you are unlucky enough to have ONJ it will be a nightmare.You should have been advised to go to a dentist and have all dental work that was required before commencing denosumab.

[ctflatlander]

Welcome. I can only give you my experience. Developed onj after almost 3 yrs on it. It has healed despite having good teeth. Wish I knew more about bone strengthening agents before starting on I. Been off it for 10 month and wish I could get a Dexa Scan. Insurance will allow test every 2 yrs. Best to you on your journey.

[leo2634]

I was on Xgeva for about a year back in 2018, and it caused jaw bone problems for me, and my doctor stopped it. I had two oral surgeries done to remove dead jawbone as a result. My doctor just had me continue with calcium and vitamin D. Leo

[MateoBeach]

IMO the potential benefits outweigh the risks, especially if your dentition and care are good. 5 years I think are okay on it at 3 month Xgeva dosing. When you finally decide to stop it you can transition to an oral like alendronate to prevent rebound loss. And by then we will know more.

[Seasid in reply to MateoBeach]

If you can tolerate alendronate.

[Amadeus71]

Much appreciated

[Seasid]

What is your PSA now?