In Jan. 2020, after I had been on Lupron since 11/2018, my MO started me on Xgeva even though 1. I had never had a bone density scan and 2. Had no diagnosis of osteoporosis or other indicators of bone issues. In Sept. 2020 I had my first ever bone density scan and it was normal.
Since then, I have read TA say that one should not start Xgeva without a bone issue diagnosis. Also, I have read it can be dangerous to stop once one has been on it a while. I've had four quarterly shots through Dec. 2, 2020. Next visit with MO is in June so nothing further till then.
Question: can anyone send me a (or some) straight to the point authoritative literature on both points for when I sit down with MO in June? Opinions from the board here will not suffice. Something from the manufacturer or FDA caution would be best for this MO.
If I can clarify anything, please ask. Thanks.
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Where did you read that it is dangerous to stop it? I've never heard anything remotely resembling that. In fact, Fred Saad advocates a break after about 2 years.
Bone strengthening agents are beneficial for men who are metastatic and castration resistant, but the benefit for men who are hormone sensitive is less clear. STAMPEDE found there was no benefit in symptomatic progression with Zometa alone. However, when combined with Celebrex, there was a 22% increase in survival:
"The systemic management of prostate cancer includes hormonal agents known to harm the skeleton. Today’s standard of care should include a bone density testing to assess osteoporotic fracture risk for any patient prescribed systemic therapy for prostate cancer. For patients with high-risk bone density findings and nonmetastatic disease, osteoporosis dosing of bone-strengthening agents can address this risk. In men with castration- resistant prostate cancer metastatic to bone, monthly therapy with denosumab or zoledronic acid can prevent or delay skeletal-related events (SREs) caused by cancer."
I read a post on another forum that it could be dangerous to stop. And there are numerous references to that on the internet, although those may assume you were originally prescribed it properly. Here's one: xgeva.com/taking-xgeva/dose...
I am metastatic, at least 3 or more mets to ribs, vertebrae, and hip. Lupron has kept PSA just under 1 since 2018, so i am not castrate resistant.
There is a lot of misinformation on the internet. That Xgeva site says nothing about any danger in starting and stopping. Fred Saad advocates taking it for no more than 2 years at a time.
Actually, it did say that stopping it could cause broken bones in spine, but doesn't make clear if that applies to a person who never should have been given it.
Haven't you cautioned against starting it if one has no existing bone issues? Maybe I misunderstood. That's the heart of what I'm asking about.
I think what they mean is stopping it if you need it can cause fractures.
I am just passing on what the ASCO guidelines say, which I quoted above. It clearly says to assess BMD before using bone strengthening agents for men who are hormone sensitive and taking ADT.
Fred Saad, MD, FRCS, Professor and Chief of Urology, Director of GU Oncology, Raymond Garneau Chair in Prostate Cancer, University of Montreal Hospital Centre (CHUM), Director, Prostate Cancer Research, Institut du cancer de Montréal/CRCHUM.
He is probably the foremost researcher on bone strengthening agents. You may enjoy this interview with him that addresses your questions:
"I was speaking with Tia Hagano the other day and she mentioned some study that demonstrated that when you stop denosumab, there's actually potentially a reflex increase in the development of skeletal-related events. And I'd love to know if you have any comments on that or if you're concerned about that as you dose de-intensify after the two years?
Fred Saad: Yeah, so I think a lot of that data is from the osteoporosis setting, where it was already pretty infrequent and when you stopped, then the bone markers went back up. So this is in more in osteoporosis. I think in the metastatic setting, we definitely wouldn't stop in a patient who is progressing, but in a patient who is completely stable cancer-wise, bone-wise, I think it's an option to maybe spread it out, but this is after having had intensive therapy for a couple of years."
Yeah, I don't think the evidence base for drug holidays is very robust. Logically it should make much more sense for denosumab than for the bisphosphonates. There may well be newer data; I saw this:
I started xgeva in December of last year, I have a met and castration resistant but the found some degeneration in my wrist and knees. Granted I have a oart time and full time in the last that requires me to stand and use my wrists alot. Monthly shots this year then every three months after , since I am on arbitrone, predisone and lupron three month, he thought it would be wise after the last bone scan last December 2020. So far he has been correct so I trust his judgement, he knows I am active, walked three miles yesterday and two miles today. He does blood work monthly and told me what to look for and watch the levels.
Father was dx in 2017 with a lot of bone mestastases, so they put him on Zometa for 3 years, then on Xgeva, when he had a progression. But after 1st shot we found out that he have very nasty side effect - BRONJ (bisphosphonate-related osteonecrosis of the jaw). I think it is better not to use this kind of treatment if you really don`t need it.
I had lowish bone density in March 2017, after having been on ADT since 2010.I had three Xgeva doses 2 months apart but then I had beginning of ache in right side lower jawbone which turned out to be beginning of jaw necrosis. My good dentist found a hole in skin inside mouth covering jaw, and she sent m to oral surgeon who confirmed what I thought was wrong. LJN is common in men who have been on ADT for years, and I stopped taking any more Xgeva, aka Denosumab, and my onco had over prescribed it and usually there is no need to have it more often than once each 6 months.
I am having Xofigo now, aka Radium 223 for Pca in my bones, and its thought that Xgeva effect boosts the effectiveness of Ra223. But having too Xgeva much seems quite pointless, and I looked at pictures of ppl with advanced LJN and some had 10mm dia holes in skin and you could see exposed both surface, and some has upper jaw necrosis as well.
I have osteopenia, but can do all I like to do without bones breaking breaking easily from old age ( now 73 ) or breaking from effects of Pca in bones.
I have no visceral soft tissue mets, and only have Pca in bones, hence choice of Ra223, after I docs found new mets in bones which would not have responded to more Lu177. I had 6 doses of that, but Psa went very low to 7, then zoomed up to about 300 now in 4 months.
I hope to kill bone mets and of course that means that a % of my bone marrow will be destroyed. The idea is that after I complete Ra223 I have high % of bone marrow still left.
Some men who have high number and size of bone mets find that there is so many bone mets that all bone marrow is destroyed so having Ra223 is not going to help them, and they will get palliative care, or move to a hospice, so having bone mets which nothing can treat is a bad outcome.
I might do real well on Ra223, or find that the Pca mets in bones all grow so fast that the Ra223 kill rate cannot keep up.
I had bone density scan in 2018. Result said osteopenia and lumbar spine said too involved with metastasis to even rate it. Started 6 month prolia shots. After 2 uears another bone density scan. Result no longer said osteopenia in fact had normal range. Lumbar spine had good ratings except for one vertebrae. I'm staying on prolia for now, i was given the choice
I was put on Xgeva without a bone scan. Oncologist said this is good BUT you must have any dental problems corrected. Had Periodontal Disease for 40 years history. Had 11 teeth extracted and fit for upper denture on 1/7/20. Oncologist started me on Xgeva 10 weeks later. My extraction stared to stop healing, pain 4 level, as I thought i had healing pain.Dentist for dentures said I have Osteonecrosis! (dead jaw bone) Off Xgeva for ever.
May be good for some people , but about 8% of cancer patients get osteonecrosis as advertise effect.
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