Xgeva Question...Please tell me what it is like for you to be on Xgeva

[Darryl]

Hi Please tell me what it is like for you to be on Xgeva. Are the injections painful? Have you stopped taking the injections because of side effects from Xgeva? Whatever you can share from your experience with Xgeva will be helpful. Thanks in advance.

[RyderLake2]

Hello Darryl,

I take a maintenance dose of Prolia every six months to lessen the chance of a skeletal related events (SREs). Some people say that Prolia and Xgeva are different drugs but I think that is bunk. The medical name for both is denosumab and it is marketed as either Xgeva or Prolia depending sometimes, on where you live. As far as I know (and until I am told differently), they are the same drug. My experience over seven years is no serious side effects. My oncologist's opinion is that Prolia (aka Xgeva) is a far safer drug to take than Zometa (zoledronic acid). His reasons include less flu like symptoms, kidney function doesn't have to be monitored so frequently, and Prolia is better at reducing the risk of bone fractures and other bone complications. I personally take Prolia injections because of widespread bone metastases. The dose I receive is 60 mg subcutaneously every six months. The drug is administered by my family doctor who checks kidney function prior to a scheduled injection. Because Prolia is not considered to be a prostate cancer drug, (like Zoladex or Xtandi) it is not paid for by our local cancer agency. All that means is that I have to claim it under my extended health provider. Hope that helps.

[monte1111]

Just a little prick in the stomach fat for me. Easier than getting a blood test. Not aware of any side effects. But taking multiple drugs makes it hard to sort out. Changed from once a month to every 3 months now. Others have also been changed to once every 3 months after about 3 years. Don't know of the actual medical implications of taking it so long.

[GoBucks]

I have been taking Xgeva now for about 2 years. I have bone mets and osteopenia. I have had zero side effects other than a sore shoulder for a couple days. I get my shot every 6 months. From United Health Care 2019:

The FDA approved a second indication for denosumab (Xgeva). Xgeva is approved for the treatment of patients

with bone metastases from solid tumors.

 The FDA approved denosumab (Prolia) as a treatment to increase bone mass in men at high risk for fracture

receiving androgen deprivation therapy for nonmetastatic prostate cancer. In these patients Prolia also reduced

the incidence of vertebral fractures

[Gearhead]

Been on Xgeva 18 months. Injections (1 every 3 mo) aren't painful. Started Lupron + Zytiga + prednisone at the same time as Xgeva. I have all the usual side effects from those drugs. I don't think I have any side effects associated with Xgeva, but of course one can't be certain about which side effect is caused by which drug.

[MMK-XFuture]

On Xgeva, have only had 3 shots, once a month. Sub-cutaneous on my stomach approx 3" from belly button. Not painful. Onco insisted on getting dental checkup and full mouth xray prior to make sure there are no jaw bone problem.

Read about Estrogen patch as sub for Xgeva, no jaw necrosis side effect and less costly. Waiting for input from my Onco.

[michael00]

Been on prolia instead of xgeva. Shot in arm no worse than any other shot. I don't notice any side effects. What i do notice is a lessening of back pain. 2 weeks away from next shot I'm seeing a little increased pain and looking forward to the next shot helping that

[leo2634]

On it three years Xgeva it is not painful at all . The side effects are minimal but get a dental exam first I learned the hard way . I had two teeth extracted even after pre- Xgeva shot and had to have oral surgery on the area of extraction due to bone trauma. My Doctor said he doubts the Xgeva caused the problem it was most likely the extraction itself. I'm on it still and monitored closely for Calcium levels the drug can cause drops in levels . Leo

[Olivia007]

My dad has been on xgeva since 2015 he says it hurts I see the needle because I’m there so the needle is a little thicker. But he’s ok what’s the alternative?

[Magnus1964]

I have been on xgeva for over 4 years with no side effects. Does the shot hurt? That depends on who is giving the shot.

My jaw cracks sometimes but I was told it is not necrosis. I have been toying with the idea of holding someone's feet to the fire on that. The thing to remember is you can always stop xgeva anytime.

[Scoofer33]

I have posted on this topic before but will do so again to help you out, Darryl. Thanks for all you do to keep this site as helpful as possible.

Yes, Prolia and Xgeva are both Denosumab (BTW, whenever you see a drug spelling ending in "mab" you know it's a Monoclonal AntiBody!) however they are so different in dosage that they have to be marketed differently. Xgeva is twice as powerful as Prolia, and usually given twice as often, effectively making Xgeva four times as powerful as Prolia.

The shot is typically injected into your arm or belly (less pain receptors in belly) and can cause dime-sized welts to rise in the days following an injection but they usually disappear shortly after. The injection is no more painful than a regular shot.

Like bisphosphonates, these drugs have shown a 1.8% chance of conferring upon their recipients an unfortunate condition known as OsteoNecrosis of the Jaw (ONJ), an unsightly and painful condition whose usual treatment with an oral rinse of Chlorhexidine gluconate (CHG, like the wipes one uses to prep a surgery site on the body) makes teeth change color. Quarterly teeth cleanings can help with this problem.

[JamesAtlanta]

Was on Xgeva for 4-years. First quarterly, and after 2-years my MO moved to 2X per year. She said that there were insufficient studies on long term use and don’t not want to take any risks.

The shots only hurt if they don’t take their time injecting. Maybe a little soreness for a few days at the injection site.

All in all it works well and no significant side effects. Hope this helps!

James

[ctflatlander]

I'm 76 YO and been on Xgeva for 13 mos and no noticeable side effects. I get them every 12 weeks along with Lupron, also on Zytiga, Dexamethazone and other supplements. .