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Xgeva (denosumab): What side effects and how do you manage them?

Posted by tneal4433 @tneal4433, Jun 9, 2025

My 89-year-old dad was diagnosed in Nov, 2024 with stage 4 prostate that has advanced to his bones, mostly all over skeleton. He has been on Orgovx since then and recently added Xgeva injection. It seems as if since his Xgeva injection (four weeks ago) he has really become weak, no energy, no appetite and this weekend vomited some. We have a doctors appointment today and I'll discuss these issues but was wondering if anyone on this forum had any insight. I can't tell if this is medicine or if his cancer is causing all this. Thanks

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Profile picture for rdslmks
rdslmks | @rdslmks | May 1 9:52am
In reply to @stage4lovolmetpc "My MO has set me up for a 120mg injection of Xvega the end of May,..." + (show)
Profile picture for stage4lovolmetpc @stage4lovolmetpc

My MO has set me up for a 120mg injection of Xvega the end of May, I am concerned about the ONJ aspect of this treatment. I have been researching (clinical trials, manufacturers literature) and have learned that the odds of contracting necrosis of the jaw are more than what was previously thought. The longer Xgeva is administered the greater the risk of ONJ and the discontinuation of the drug can also cause this side effect. Prednisone (with Zytiga) can make the chances of ONJ worse. Along with the text, I have viewed several photos of ONJ, much to my dismay. I have an appt with my dentist in a week and will learn more then about my specific situation. Once again I am learning that cancer is a business, the cost of each subQ injection is 3500 to 4200 dollars. And is given every month. Not that I will have to pay that...insurance will cover it but that is the problem with our healthcare system. I digress, pardon me. Any thoughts or experiences? I am early in my stage 4 treatment, ADT and ARPI only
for the last 2 months. Seems early to be taking Xgeva. Thanks for reading my post, I will be reading yours....

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My husband refused the Xgiva (and the others that are similar). More harm and side-affects than what it is worth. He made sure to take Calcium + D (extra strength) daily and concentrate on bone building exercises. His MO pushed pretty hard but he still refused it. I think the Onco was getting a kick-back 🙂

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Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | May 1 11:23am
In reply to @stage4lovolmetpc "My MO has set me up for a 120mg injection of Xvega the end of May,..." + (show)
Profile picture for stage4lovolmetpc @stage4lovolmetpc

My MO has set me up for a 120mg injection of Xvega the end of May, I am concerned about the ONJ aspect of this treatment. I have been researching (clinical trials, manufacturers literature) and have learned that the odds of contracting necrosis of the jaw are more than what was previously thought. The longer Xgeva is administered the greater the risk of ONJ and the discontinuation of the drug can also cause this side effect. Prednisone (with Zytiga) can make the chances of ONJ worse. Along with the text, I have viewed several photos of ONJ, much to my dismay. I have an appt with my dentist in a week and will learn more then about my specific situation. Once again I am learning that cancer is a business, the cost of each subQ injection is 3500 to 4200 dollars. And is given every month. Not that I will have to pay that...insurance will cover it but that is the problem with our healthcare system. I digress, pardon me. Any thoughts or experiences? I am early in my stage 4 treatment, ADT and ARPI only
for the last 2 months. Seems early to be taking Xgeva. Thanks for reading my post, I will be reading yours....

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My oncologist put me on Zometa because the problem with Xgeva was much higher.

You might want to look into the comparison risk between the two drugs.

One benefit of Xgeva is that you can do it for two years and then get a Zometa infusion and it sort of locks in the benefits that you get from Xgeva.

I did take Fosamax for six years, It has a lower chance of causing osteonecrosis. It did seem to keep my bones strong.

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heavyphil | @heavyphil | May 2 2:49pm
In reply to @stage4lovolmetpc "My MO has set me up for a 120mg injection of Xvega the end of May,..." + (show)
Profile picture for stage4lovolmetpc @stage4lovolmetpc

My MO has set me up for a 120mg injection of Xvega the end of May, I am concerned about the ONJ aspect of this treatment. I have been researching (clinical trials, manufacturers literature) and have learned that the odds of contracting necrosis of the jaw are more than what was previously thought. The longer Xgeva is administered the greater the risk of ONJ and the discontinuation of the drug can also cause this side effect. Prednisone (with Zytiga) can make the chances of ONJ worse. Along with the text, I have viewed several photos of ONJ, much to my dismay. I have an appt with my dentist in a week and will learn more then about my specific situation. Once again I am learning that cancer is a business, the cost of each subQ injection is 3500 to 4200 dollars. And is given every month. Not that I will have to pay that...insurance will cover it but that is the problem with our healthcare system. I digress, pardon me. Any thoughts or experiences? I am early in my stage 4 treatment, ADT and ARPI only
for the last 2 months. Seems early to be taking Xgeva. Thanks for reading my post, I will be reading yours....

Jump to this post

Neither FORTEO nor TYMLOS cause ONJ , so those are good alternatives if you absolutely have to take something.
My wife was diagnosed with osteoporosis and neither of us wanted her to go on any of these bone building drugs. She is currently taking Fortibone collagen peptides.
You take a daily scoop in your coffee or hot cereal. It is clinically proven to work, however, it does take a few years to show a difference on the bone density tests.
So she just won’t take one for two years – it’s that simple.
The problem with a lot of these bone density drugs aside from the ONJ is the fact that while they may strengthen bones in the spine, they can actually cause spontaneous fracture of the long bones such as the femur or humerus.
Phil

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Profile picture for stage4lovolmetpc
stage4lovolmetpc | @stage4lovolmetpc | May 4 8:17am
In reply to @stage4lovolmetpc "My MO has set me up for a 120mg injection of Xvega the end of May,..." + (show)
Profile picture for stage4lovolmetpc @stage4lovolmetpc

My MO has set me up for a 120mg injection of Xvega the end of May, I am concerned about the ONJ aspect of this treatment. I have been researching (clinical trials, manufacturers literature) and have learned that the odds of contracting necrosis of the jaw are more than what was previously thought. The longer Xgeva is administered the greater the risk of ONJ and the discontinuation of the drug can also cause this side effect. Prednisone (with Zytiga) can make the chances of ONJ worse. Along with the text, I have viewed several photos of ONJ, much to my dismay. I have an appt with my dentist in a week and will learn more then about my specific situation. Once again I am learning that cancer is a business, the cost of each subQ injection is 3500 to 4200 dollars. And is given every month. Not that I will have to pay that...insurance will cover it but that is the problem with our healthcare system. I digress, pardon me. Any thoughts or experiences? I am early in my stage 4 treatment, ADT and ARPI only
for the last 2 months. Seems early to be taking Xgeva. Thanks for reading my post, I will be reading yours....

Jump to this post

Thank you to the people kind enough to respond to my post. I called the Dr this morning and canceled the Xgeva injection due to possible dental issues (I am seeing my dentist next week) and the fact that prednisone may worsen the awful side effects of osteonecrosis when used in conjunction with Xgeva. I also asked for a bone scan to have a baseline for bone density. I am currently taking D3 and calcium and will research Fortibone, thank you Phil. Now an opinion: after going down the rabbit hole of adverse effects of ADT and ARPI, taking weeks to decide to take the drugs, and now having been on them for 2 months ( with good results).....to have the Dr prescribe Xgeva and expect me to take it with no explanation of side effects was upsetting, I will have to admit. I read all the posts here and on the osteoporosis thread, I think I can say, with certainty that we, as cancer patients, have to advocate for ourselves. Imagine trying to gather information without the internet......as much as I dont like spending time on the computer... it is a valuable resource. The Drs must hate it when we pretend to know everything about our cancers....lol...not really.... but it does make me feel better knowing that I can talk with the Dr with some knowledge of the subject. Best wishes to everyone, thanks for reading this post, I will be reading yours!

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lag | @lag | Jun 6 4:40pm

Has anyone experienced side effects such as muscular weakness, fatigue, loss of appetite, loss of weight after starting on Xgeva?

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1 reply
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lag | @lag | Jun 8 5:43pm
In reply to @stage4lovolmetpc "My MO has set me up for a 120mg injection of Xvega the end of May,..." + (show)
Profile picture for stage4lovolmetpc @stage4lovolmetpc

My MO has set me up for a 120mg injection of Xvega the end of May, I am concerned about the ONJ aspect of this treatment. I have been researching (clinical trials, manufacturers literature) and have learned that the odds of contracting necrosis of the jaw are more than what was previously thought. The longer Xgeva is administered the greater the risk of ONJ and the discontinuation of the drug can also cause this side effect. Prednisone (with Zytiga) can make the chances of ONJ worse. Along with the text, I have viewed several photos of ONJ, much to my dismay. I have an appt with my dentist in a week and will learn more then about my specific situation. Once again I am learning that cancer is a business, the cost of each subQ injection is 3500 to 4200 dollars. And is given every month. Not that I will have to pay that...insurance will cover it but that is the problem with our healthcare system. I digress, pardon me. Any thoughts or experiences? I am early in my stage 4 treatment, ADT and ARPI only
for the last 2 months. Seems early to be taking Xgeva. Thanks for reading my post, I will be reading yours....

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To All:
Please describe the side effects you have experienced from Xgeva, aside from jaw bone issues. We are trying to figure out the cause of some recent serious side effects. Thanks in advance.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 hours ago
In reply to @lag "Has anyone experienced side effects such as muscular weakness, fatigue, loss of appetite, loss of weight..." + (show)
Profile picture for lag @lag

Has anyone experienced side effects such as muscular weakness, fatigue, loss of appetite, loss of weight after starting on Xgeva?

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@lag, I merged the various disscussions about Xgeva into this one:
- Xgeva (denosumab): What side effects and how do you manage them? https://connect.mayoclinic.org/discussion/xegva/

Like your husband, @tneal4433's father experienced similar side effects of weakness and loss of appetite and weight.

How long has your husband been on Xgeva? Have other options like Zometa (zoledronic acid) been discussed? How is he doing?

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