Xgeva experiences

[dpowellnt]

Hello all. I've posted a few times and read religiously the information given on this forum. I now have arrived at the Docetaxel stage of my cancer. Erleada, Casodex, Xtandi, Zoladex, Lupron. All have failed and my PSA is still rising. It recently went above 4.

I am doing chemo for 10 sessions every three weeks. I finished the third one a week ago. I have only one lesion in my 7th cervical vertebrae that was just discovered. I have a new doctor because mine actually died in a car crash. This is actually my third Onco as the one previous to that died in a routine procedure that went terribly wrong. So I don't know this Onco well and need to research his advice to be comfortable.

He wants me to start on Xgeva. He warns me that it could cause severe Jaw bone pain and damage. He wants to know if I have any dental problems. I haven't seen a dentist for a long time because I have had a Pericles sword over my head, a 4-8 year survival rate, since I was 34. 31 1/2 years. I'm the poster boy for CS,

Sorry to be long-winded. My question is what have been any of your experiences with Xgeva, and what was your dental situation? Thank you for any help in making this decision.

[GoBucks]

There is a very small percentage of people who have that jaw problem. Before starting Xgeva my Doc wanted a letter from my Dentist that I was not being treated for any dental issue. If you have any any dental issues you get them treated and completed before starting Xgeva. I have had no problem with my Xgeva shots. I did notice that my arm did not hurt as much when the nurse gave me the Scooby band aid. Zoiks!

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

You still have the Scooby band aid? If so, send it to me I collect them.....Zonks!...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/12/2020 7:44 PM DST

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

You collect used band aids?? LOL. Just made an appointment for next Xgeva shot next week. If I remember, I will see if they still have them. Also, if I remember, a miracle happened.

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

I save new ones (and used ones.... but only if the used ones aren't sticky anymore)...Hope the needle is sharp when you get your shot. See if you can get a minnie mouse band aid she's not in my collection (that's is if you have a miracle and remember)...Stay safe....

BTW Just thought about if you're getting your shot remotely? If soooo. then long fn needle.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/12/2020 9:41 PM DST

[RyderLake2]

Hello,

Make sure you tell your dentist because there is a small percentage of people taking Xgeva (Denosumab) who get osteonecrosis of the jaw. I was told about 2%. You might want to get any extractions or serious dental work done ahead of time. Having said that, I have been taking the maintenance injection of Prolia (another name for Xgeva) for seven years. No serious side effects. My oncologist feels it is a superior drug for osteoporosis or Skeletal Related Events (SREs) than its competitor Zometa (Zoledronic Acid). My family doctor gives me the Prolia injection twice a year (every six months). Hope that helps!

[Tall_Allen]

Is the cervical vertebrae in danger of rupturing? Have you had a DEXA scan? What were the results? Xgeva should not be given unless there is reason. If there is reason, it can prevent fractures and spinal compression. Check serum Vitamin D and Calcium levels too.

[Gearhead in reply to Tall_Allen]

Tall_Allen: Do I understand from your reply that simply having a spinal met is not reason enough for Xgeva? If that's the case, what additional criteria would justify Xgeva?

dpowellnt: I replied to your last post with some details because I also have a cervical lesion. I've been on Xgeva (and Lupron and Zytiga) for 15 months. I have all the usual ADT SEs, but I can't detect any SEs unique to Xgeva. I would think you might be far more alert to Docetaxel issues than Xgeva issues. Good luck!

[Tall_Allen in reply to Gearhead]

Your doctor can make a judgment based on the degree of invasion and your BMD.

[dpowellnt in reply to Tall_Allen]

BMD? Thanks TA for your always informed advice?

[Tall_Allen in reply to dpowellnt]

bone mineral density - it's what a DEXA scan tells you

[dpowellnt in reply to Tall_Allen]

Thanks so much Tall.

Let me ask you another question. The day after my first chemo I got a bad lower back pain. I thought it was suspicious because of the timing. I didn't remember doing anything the day of the chemo to injure my back. I just woke up and I couldn't barely walk. I talked to my Onco when I went to my second treatment and he said lesions don't grow that fast and the bone scan only showed the cervical lesion. He thought it was probably muscular (did I say I'm not sure about this new Onco. Lol).

My back pain continued through my second and third chemo session, albeit less, but still there. Then Friday last I lost my balance and fell very hard backwards into a cabinet which struck me right on the spot that hurt. The pain was immense. I've had cancer since I was 34, and have had some pretty awful pains. I would of ranked this as the third worst ever pain. a real 9 1/2er.

So we were moving to Canada, and I had to drive the truck THAT day. When I got across the border (no small feat) I collapsed in bed and could not get up. For two days I had to crawl to the bathroom. Could not stand. I took my Hydrocodone for the pain and it seemed to get better. Eventually I could walk around. That was a week ago.

Yesterday I woke up and the pain had changed. I was having back spasms and again I could not stand up at all. Pain is now specific rather than the whole back. We are complicated because we are now in quarantine in Canada. I won't have insurance until I become a PR, which will take months. Canada is expensive care if you don't have insurance. I was planning to apply for temporary insurance but with the move chemo, COVID, it never got done.

Again long winded. Sorry. My question is do you think this could be related to my now metastic cancer? Could this be a lesion developing that I just exacerbated with the fall? I will find out definitively as soon as I can see my doctor. But he is on the other side of the border and I still have 7 days quarantine.

Yeah. My life is complicated. Lol.

[Tall_Allen in reply to dpowellnt]

Worth checking out.

[Magnus1964]

All doctors give those warnings about xgeva. In a small percentage of patients these effects can occur. I hav been on xgeva for 2 years with no side effects.

[j-o-h-n]

Timing is everything..... Can you talk to your Oncologist again? Make it soon!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/12/2020 7:53 PM DST

[tallguy2]

You will likely have no issues with that prolia shot. I've had it 4 times with no noticeable side effects.

[Fuzzman77]

Just had part of my lower jawbone and new bone growth on the inside of my jaw removed today due to Xgeva. I guess I was in the lucky 2%. If you need any type of dental work done it is suggested to have it done before starting Xgeva. Unfortunately, after being on Xgeva for about 18 months or so, I had a tooth giving me terrible pain. Come to find out after 10 years an old root canal was found to not have had one of the roots filled with cement and it got infected. Had it redone telling the dentist I was on Xgeva. NEVER got rid of the infection and had to have it pulled. Almost immediately after it was pulled The inside of my jawbone grew about a centimeter out from the jawbone and about 3 centimeters long. Oral surgeon told me it was best to wait at least six months as it can take Xgeva that long to clear. The jawbone finally started falling out and when I went in today for emergency surgery he found the big chunk of bone wasn’t solidly attached so pulled them both out. Thankfully I was able to wait the six months and having it fixed consisted only of having the two pieces of bone removed. Having the tooth pulled was MUCH worse. In retrospect maybe I should have stopped the Xgeva after my bone mets had resolved. Who knows. Get some xrays and any work done you need would be the only recommendation I’d have for you. It’s a good drug in that it can rebuild the bone and prevent fractures or breaks.

[dpowellnt]

EXACTLY the kind of post I was wondering about.

I too have some "issues" with my teeth due to neglect. A unfinished root canal (still have the temporary, and some disintegrating teeth.

Thank you for the info. This was very important to me.

[benninger]

My husband went to the dentist before he started on the Xgeva and his teeth were fine. They were giving him a shot every month along with his chemo every 3 weeks. After about four months he started to have pain in his jaw and there was a large piece of jawbone exposed and coming loose they removed it and about 3 months later another large piece was removed.

[dpowellnt in reply to benninger]

Thank you. I appreciate you sharing very much.

[Calhoun113]

Go to dentist or periodontist before starting treatment. Make sure they understand Xgeva. Once you start Xgeva there are ramifications if you stop. Some endodontists can perform root canals without disturbing the jaw bone. I just had laser surgery on my gums/jaw. My teeth were shifting. I have a shot of Xgeva every month. Supposedly it counteracts the side effect of Eligard. My periodontist is well informed on treating patients being treated with Xgeva.