Thinking about stopping Xgeva

[Professorgary]

When my urologist suggested I see an oncologist I was immediately put on Abi and had a Dexa bone scan scheduled. That was August and scan was done Dec. In the meantime he started me on Xgeva because I had been on adt for 16 months. He agreed to 1 injection every 3 months after 6 months even though my dexa scan revealed normal bone density -1.0 at worst site and 0 or better at others. Bone scan showed +2.5 on right femur that had cancer but is now resolved. Apparently several places they test either have arthritis or were spots that had cancer and it is now resolved so they can show better results that is actually true. The first injection no problem but injections 2, 3 and 4 got progressively worse. Fatigue, muscle aches, shortness of breath and small sores on the body. I cancelled my 5th injection and feel like a new man. Energy back, no aches and body sores starting to heal nicely with no new ones. I researched Xgeva and found that when you get the 4th injection you have approximately 187% of the dosage in your body that you had on your first injection. If this is the case one injection every 3 months would produce a dosage of about 137% and drop to about 68% after a month and 35% at the time of the next injection. I may be able to tolerate this but wonder if the risk is worth the reward. One think I might add is I had two compression fractures back when my Psa was 5664 and I started Lupron. TIA.

[Tall_Allen]

If your BMD is normal, there is no reason to risk side effects by taking Xgeva.

[Professorgary in reply to Tall_Allen]

Thanks TA. That’s what I was thinking. I’ll have another dexa scan in a year and evaluate.

[carbide]

I was on xgiva, I had adverse reaction.Literature says three to four percent develop adverse reaction. mine was osteonucrosis.

Lost my teeth. Pain in right shoulder. Much pain.

I was never given a bone density test, however if your bone density is normal do not take Xgeva until you have issues. not worth the risk.

[j-o-h-n]

Did your M.O. warn you (verbally) about the side effects of Xgeva? I think he should have.......

Good Luck, Good Health and Good Humor.

j-o-h-n

[Professorgary in reply to j-o-h-n]

Absolutely. I had to sit there with the nurse practitioner and then sign paperwork giving consent to treat. It took 3 months to get the dexa scan so he started Xgeva because I had two compression fractures. I was willing to go ahead with treatment because of that and because I had already been on lupron for about 17 months.

[Cactus297 in reply to j-o-h-n]

Totally, John!

[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.

[Professorgary in reply to Gearhead]

Wow, thanks Gearhead. I have only had 4 injections so far. Pretty sure I am done at least until I see my primary care. I started Abi in Sept and Xgeva in October and at first thought the side effects were from the Abi. Been a little over 6 weeks since last injection so there is still 70% of a full dose in my system. It’s amazing how much better I feel. I am one of the guys who feel exercise is very important and you can’t exercise if you can’t catch your breath. God bless.

[Cactus297]

My son has been on Lupron and generic Zytiga and prednisone for just over a year. His PSA is low but he’s gained weight. I can’t say he loves Lupron but thus far it’s working which is what we all want. He was put on Firmagon first but the pain from the injection was unbearable so they switched him to Lupron. I had never heard of Xgeva before and it sounds just awful.I hope you do well on Lupron.🙏🏻

[Professorgary in reply to Cactus297]

Actually Xgeva is to prevent osteoporosis which Lupron and zytiga can cause. Most people don’t seem to have issues. I am responding well to the Lupron and zytiga with minimal side effects. Thank you for your comment. God bless.

[Cactus297 in reply to Professorgary]

I didn’t realize that. Thanks for letting me know. If my son ever mentions he’s being put on Xgeva I will let him know about your poor experience with it.

[CAMPSOUPS]

Do you have widespread bone metastasis? If so the Xgeva may be more for that than concern about osteoporosis.

[Professorgary in reply to CAMPSOUPS]

Yes, quite extensive but have resolved since starting abiraterone.