my concern is about osteonecrosis of the jaw,as I don't have great oral health.
my medical oncologist wants to put me on xgeva for my stage 4 metastatic prostate cancer which is in the bones.
What alternatives are there to xgeva?
Question posted by kgc2043b on 8 Feb 2014
Last updated on 17 May 2018
3 Answers
CallMeBob
9 Feb 2014
I have a GREAT deal of experience with this subject. I'm in the same boat as you. Stage four, 120+ bone lesions. I was on Xgeva for 8 months. There was a remarkable improvement between the scan prior to Xgeva, and after six months. The metabolic activity in the lesions was almost eliminated. The differences were DRAMATIC! The stuff worked wonders on me. All bone related pain was gone in three months. ... I developed ONJ in the ninth month and was taken off. I have since wished doc would put me back on. FIRST, DONT PAY ANY ATTENTION TO THE INTERNET PICS. The ONJ from Xgeva is VASTLY different from the same disease caused by the biphosphonate drugs which are the vast majority of the pics you see. My ONJ was a direct result of recent dental work. Xgeva was still new, neither doctors nor dentists were completely up to speed on protocol. My oncologist required me to get cleared by a dentist before starting me on the drug.
The dentist said he had to extract two lower teeth side by side before he could clear me quickly. I had the extractions, my dentist cleared me, and you know the rest. The ONJ was in the exact location of the extractions. The jaw took about six months to heal 100%. I have no issues from it whatsoever. I've been to two oral surgeons, three separate dentists, an ENT, had hundreds of photos taken, and all agree they don't know much about THIS form of ONJ. All this took place over three years ago just after Xgeva became FDA approved. I've gotten long winded here, but my goal is to point out the benefit I received from Xgeva without trying to ignore the bad. I would do the same all over again. ... On a further note, not being allowed to go back on Xgeva, I have been started on Radium 223, (I believe it's called "Xofigo" or something like that) it's an IV. This has given me the first relief from the bone pain that resumed some months after ending Xgeva. Sorry to be so long, but we are in similar situations and I am happy to offer my experiences so far. Best wishes to you in every way. If you have any other questions, I am happy to answer, but only from my own experiences. I'm just a patient that is confident we can beat this. Bob
kathyhanson
9 Feb 2014
Bob, It's always good to hear that someone has found good results from a cancer treatment. Did you ever receive chemotherapy for your multiple myeloma? Thalidomide, Velcade, Remicade or the stronger chemo drugs? Has your immune system been affected by the myeloma? I'm always curious to hear other patients' experiences. We help each other!
Mary65
12 July 2017
Hi Bob I realise it's a few years since you posted on this subject
First of all how are you doing
Secondly how long would you say to wait after extractions before going on the drug. Would you say 3 months is about right
Thankyou
Mary
GiuB
17 May 2018
Hello Bob:
I know that the post I am reading is from a few years ago. I would like to know how Xofigo worked for you and what you have done next.
My husband was diagnosed in the week of his 57 birthday, and we have been on a mad rollercoaster.
Thanks
kaismama
8 Feb 2014
It may be a trade off. Take the med you need and risk the problems with your jaws, or not have meds you need. Talk to your oncologist about your concerns.
kathyhanson
8 Feb 2014
Hi kgc! I'm sorry you are having to deal with this horrible disease. Hang in there! There are just a few meds/treatments similar to Xgeva. All of the others are zoledronic acid.
https://www.drugs.com/condition/osteolytic-bone-metastases-of-solid-tumors.html
I have been getting Zometa (zoledronic acid) for 10 years and have had absolutely no problems with osteonecrosis of the jaw. It is important while getting one of these meds to visit your dentist regularly. You should see a DMD rather than a DDS because a DMD has more knowledge of these meds and will know what to look for regarding bone loss. But please, let me reiterate that osteonecrosis must be listed as a possible side effect if anyone has experienced it while on Xgeva. That does not mean that you will definitely develop osteonecrosis.
The Zometa that I get also has this condition as a possible side effect. I wouldn't worry about it as long as you improve your oral health and visit your dentist regularly. Best wishes for good results from your treatments.
Related topics
prostate cancer, cancer, aseptic necrosis, medical, xgeva, prostate, bones, bone, oncology, health
Further information
- Xgeva uses and safety info
- Xgeva prescribing info & package insert (for Health Professionals)
- Side effects of Xgeva (detailed)
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