Xgeva

[CBurnett]

Anyone on or have been on xgeva? What were your experiences like? Dad is still in hospital and had his shot last week. Yesterday he started have bad Lower back pain. Today he has pains in thighs, hips, back. He says like growing pains but just miserable. He put some ice on his hip and said it helped. Any advice? Suggestions. Thanks.

[erjlg3]

All good experience for my husband. I think he's been on it for about 5 years. Started out every month. Now every 3 months. Doctors say he has miraculous healing of his bones where the cancer was. Good wishes. I think it was more like 8 years.

[erjlg3 in reply to erjlg3]

He finally stopped Xgeva.

[Jeff54]

I have been on Xgeva for 3 years and 6 months. Oncologist gives me the shot ever 3 months.I have no side effects.

[CBurnett]

Thanks. I think he has such horrible bone mets that he may be experiencing some SE. I am hoping that is what it is. Will see in a few days.

[Cancer09]

No issues with xgeva .my husband had a monthly injection it just stung at the site of injection .less if injected very slowly ...

[charmander]

I receive xgeva every month for the last 2+ years with no side effects at all. His pain may be from something else.

[CBurnett in reply to charmander]

That is what I am starting to think.

[bb66hotflash]

I was on XGEVA (denosumab) for 30 months. Getting a shot once every three months. Then I had a cap on a molar fall off and determined the tooth was beyond saving and had it removed (extracted). After a month, the extraction site did not heal, with a piece of jawbone protruding thru the gum. I had Anti-resorptive agent induced OsteoNecrosis of the Jaw (ARONJ). Some of the bone was filed down and after four months, stopping the XGEVA, my gums finally healed. The good news is that denosumab is not retained in the body, like biophosphonates. Biosphosphonates are retained in the body for a long time. I was receiving enzalutimide at the same time. I am not aware of any side effects produced by the denosumab.

[howardroark]

Have been on XGEVA for two years. Receive injection every 28 days. Typically will have some bone pain for up to a week after the injection. Not terribly pain but slight discomfort, especially in hips, lower back and right shoulder. I broke 8 bones last year from 4 falls. Broken wrist bone from falling on skateboard, broken finger from falling while mountain biking, broke 3 ribs and radius bone in right arm from falling while mountain biking, and broke 2 ribs from falling while cross country skiing. The XGEVA is helping to repair my bones, however they are still weak from damage of cancer and removal of testosterone from my system. So, in my experience although you might feel strong be careful.

[Hidden in reply to howardroark]

Howard, come on, a skateboard? I could never stand up on one myself. It's nice to hear about guys who can get out do physical things like that. Kudo's to you.

Joe

[Hidden in reply to Hidden]

Oh, I'm on Xgeva five months with no side effects.

[CBurnett in reply to howardroark]

That is exactly where his pain is.

[charmander in reply to howardroark]

Howard you're my hero!! My goal this summer is to drive in a Demolition Derby.

[rguerrero997 in reply to howardroark]

Can i ask a question, are meds like xvega and zytiga options to radiation or are they post radiation meds?

[howardroark in reply to rguerrero997]

I have not had radiation but am currently on Xgeva and zytiga. I think they could be either post or pre radiation depending on the course of how an individual's cancer manifests and evolves over time.

[docbulldog]

I have been on Xgeva for 2 1/2 years, one year with a shot every month and the rest of the time, every 3 months. I'm also on Eligard with a 3 month schedule. My joints seem a little tender, but could be from blood pressure meds. I'm curious why I was put on a 3 mo. schedule on Xgeva when I hear others are still on an , every mo schedule. I heard it was because of Medicare, does anyone know?

[rguerrero997 in reply to docbulldog]

As I begin this journey, If I can get 2-3 years out of this I'll be a happy man.

[DFZ4835]

I have been on xgeva for four years and have yet to have any reaction to it. I have very few reactions to any cancer drug other than texator and that I took care of using CBD that I got online. I am very lucky that I don't have many side effects from these drugs.

Dennis

[JamesAtlanta]

I have been on xgeva for 2-years. Never had any side effects.

[CBurnett]

Not sure why he's reacting. My hopes r it's his bones getting stronger but not sure the added pain is worth it. Today he doubles up on dexamethozone for chemo tomorrow and by this evening his back pain and leg pain were gone.

[JimVanHorn]

I was on Xgeva for 5 years with no side effects. I no longer will be using it because of my excellent bone structure. Two years ago I fell hard in a parking lot and had minimal bone problems except in my hand, but no broken or cracked bones. Last year I had only two shots and now it was discontinued. I also take 1000mg of Calcium Carbonate and 200 IU of Vit D3. My oncologist asked me to use that amount and not increase it. I wish you luck with your future.

[2catfamily]

My husband is in his 2nd year on Xgeva with no problems. Everyone reacts differently to drugs, so I am no help. Husband had a problem with Another drug and his nurse suggested what commonly resolved the problem. She was right and saved him from further discomfort. Ask dad's dr and staff if they can assist. They have amazing info which can less known but great for their patients' care.

Best wishes for your dad, and you.

[2catfamily in reply to 2catfamily]

Oops. He had some stiffness for the day after the injection. After some months, he has had no reactions to Xgeva.

He had to stop Xgeva 2 months before having a tooth pulled, and wait 3 months to heal before having Xgeva ea 28 days again. We check with the oncologist before anything else is started or done to stay on the safe side.

[CBurnett]

I asked the nurses and doc if they thought it was a side effect as I read and both responded- don't really know the drug. Sorry not sure. His oncologist is an hour away. I am so grumpy today it's sad. He's having pain so they keep pumping dilaudid into him and he was so over medicated they couldn't do chemo until he was feeling better. Then the chemo nurse decided that since he was so agitated to not put ice gloves and boots on. Great NOT! I don't even know what to think other then they are going to kill him not the cancer.

[Vinnyf]

What I have found is that it's like the nerves are being strangled, not sure if they can radiate him,but for me radiation worked wonders. Unfortunately the opiets depending on pain might only take the edge off,speak to yourdoctor about radiation,good luck

[CBurnett]

Bone pain has subsided. They changed him from prednisone to dexamethozone daily. Hoping this little change helps.

[Ewhite99]

For me, Xgeva causes lower back pain and joint pain (elbows and shoulders). I'm on Lupron and Xgeva. i wasn't sure which one was causing the pain until I switched from monthly to quarterly Xgeva shots. The joint and back pain went away about two weeks after the Xgeva shot. My scans are clean so the pain is not from bone metastasis. I told my Oncologist that it appears clear to me now that Xgeva causes the pain. he said, "Do you want stop taking it?". Seemed like a strange response. I'm assuming it's vital to my treatment otherwise he wouldn't have put me on it.