Have stage IV nsclc lung cancer which has spread to my pelvic / hip / Spine T12 bones. My oncologist wants to start me on an Xgeva injection every 4 weeks. Was wondering if anyone has had it and any side effects.
I am a bit hesitant after reading the side effects. Would appreciate any info.
Pat D
Hello! I too have stage 4 nsclc with mets to my bones (hip, ribs, upper arms, femurs and pelvic). I have been taking Xgeva shots every 4 weeks since December 2016.
I had never, ever had any issues with them until the last one a few weeks ago. They were giving me an iron infusion the same day as my Xgeva shot. Things went downhill for the next two weeks - a lot of joint pain, extreme fatigue - and when I went in for my next round of Keytruda they discovered my phosphorus level was 0.5 and admitted me into the hospital immediately. (*They always check phosphorus levels when taking Xgeva and for 16 months I remained between 3 and 4, which is a completely normal level )
I was in there for four days, with constant phosphorus infusions. My onc called in a kidney specialist who pretty much told us he was stumped. Everyone acted like I was the first person ever to go through this. However, my onc began to suspect that it was the iron infusion and once I began researching it (Injectafer) I found forums and articles all about how it causes hypophosmatemia, but that they don't state that on their packaging and for the most part, doctors are still unaware.
For the record, the kidney spec suspects it was caused by the Xgeva, but my onc doesn't agree because I didn't have any issues whatsoever until the iron infusion.
I am still - one month later- having to have phosphorus infusions as my level has never made it above 2, even with the constant infusions.
I am siding with my onc and thinking this problem is because of the iron, not the Xgeva. 16 months with no problems on it.
I may have rambled on more than necessary so please forgive me. I don't talk to a lot of people around me, so I tend to go on and on when given a chance. I wish you the very best.
Lexis6767, was this your first iron infusion or the first iron and xgeva infusions at the same time? Just wondering.
Did you take vd3 and calcium pills daily to counter-act the side effects of Denosumab ?I have taken them ever since I started Denosumab injection two years ago.
Actually, no one has recommended taking either of those at all? Have they helped you, and if so in what ways? That's very interesting
These are recommended by the denosumab drug manufacturer and adopted by all Oncologist s here in Singapore and HK ! Without these supplements, denosumab would not function properly as is intended !I am not too sure over the other parts of the world on this important issue.
I am also stage 4 nsclc with bone mets. I was on it for 2 years (the limit) with no issues.
How long have you been off it? Did it help with strengthening your bones ? Do you know if it actually helps kill the cancer too? Forgot to ask my doctor that.any additional info would be great. Thank you so much!
Not sure about the killing cancer that you asked about but my last bone density test showed a slight improvement in my bone density. I've been off of it for about 2 years.
Great to know that you have XGEVA for two years wo issues ! What do you mean by `the limit`? I s it to mean that you are no longer having injection of XGEVA ?
Just to supplment.I am still having XGEVA injection monthly though having it monthly since 3.2016.My oncologist recommends me to continue.What was the reason you stopped?
I was told per the manufacturer you can only be on it for 2 yrs, so at my 2 yr mark mine was stopped
Thx for your very speedy and pertinent response.I would have then discuss with my oncologist if I need to follow suit.BTW can any of our warriors if they have similar experiences/instructions from oncologists.
Hi. My PCP wanted me to start Fosomax (or something similar). I respectfully said NO. When you listen to the ad it seems that there are just too many things that could go wrong. What really gets me is that one of the side effects can be broken bones! When I told my onc what the PCP wanted me to do, he said, "That stuff is like pissing in the ocean." Then I let my onc know that I had no intention of ever going on Xgeva as well. I know of a few who have ended up with jaw necrosis. I have enough going on and don’t want to tempt fate. I am doing my best to do plenty of weight-bearing exercise and eating a good diet. I plan to see a naturopath in a few weeks to discuss the possibility of taking some supplements. Just my 2¢.
i was on Xgeva for 12 months. One side effect is jaw issues. I would recommend getting your dentist up to speed on the drug as well. I did take two calcium with Vitamin D3 pills (2) 600mg to keep my calcium up.
May I ask what type of jaw issues that u had?
My gums started to erode from my jaw, exposing part of my jaw. This is a rare side effect. Went to oral surgeon to remove a small piece of my jaw to allow the gums to heal over the spot. It worked and I’m doing well. I hope this helps
Did you have jaw pain prior to the necrosis? The jaw necrosis side effect is what worries me the most. I unfortunately have not taken the best of care of my mouth, for many years.
It happened after I stopped. They kept me on it for 12 months. No other issues
I have not heard of this type of treatment bit I'll be praying for you.
FRIEND of a friend had breast cancer spread to other parts of body was on chemo and they put one of those drugs boniva or fosmax in her infusion Wound up w necrosis of jaw and she didn't have any of her own teeth as she wore full dentures. She suffered horrible pain. Be careful. That was a couple years ago don't ever want to take a chance on those types of medications. Never knew person personally but her friend was very upset as you can not undo the damage.
Latest update on dramatic results with Opdivo 
Living with the fear of chemo
Starting Immunotherapy Keytruda
Recovering from brain and lung radiation 
