MO wants me on Exgeva stat. I have several spine mets. Currently on my 4th infusion of chemo.My dentist says do get a deep clean first. Relayed that info to the MO who said take care of the spine first. .Worry about ONJ later. Has anyone had a deep cleaning while on Exgeva? Thxs in advance.
Xgeva and deep clean.: MO wants me on... - Advanced Prostate...
Xgeva and deep clean.
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APK3
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Hello,
I wouldn't worry too much about getting osteonecrosis of the jaw (ONJ). The number of patients who get this as a side effect of Xgeva is very small. I was told about 1%. I have been on Xgeva or denosumab for nearly eleven years and have had my teeth cleaned by a dental hygienist numerous times. No problem. I would certainly let your dentist know in case he or she has to do an extraction but I agree with your medical oncologist. Get the injection! Hope this helps.
Thanks for your reply. I was more worried about the fact that the deep cleaning being below the gum line as opposed to a regular clean above.
There is a big difference in regular cleaning and deep cleaning. My dentist did a panorama x-ray and complete examination to be sure I could have any necessary treatment before beginning xgeva. ONJ may be rare but it can be pretty horrible. I have another appointment to be checked after one year of xgeva. Some people say not to worry if you have no symptoms but I think that might be too late. ONJ is not easily treated.
Same here, although I only get 120 mg. quarterly.
"The number of patients who get this as a side effect of Xgeva is very small. I was told about 1%. "
In fact, the % varies a lot depending on the study, specific circumstances, etc. For example, this* study is near the other end of the scale relative your 1% number. It shows that over 20% of men with PCa taking denosumab (Xgeva) for 5 years contacted ONJ.
*Nakai Y, Kanaki T, Yamamoto A, et al. Antiresorptive agent-related osteonecrosis of the jaw in prostate cancer patients with bone metastasis treated with bone-modifying agents. J Bone Miner Metab. 2021;39(2):295–301.
Onj isn’t the only side effect of Xgeva. It comprises the immune system. I took 4 shots and stopped. My T scores were normal but they wanted me to start Xgeva before dexa scan which came back normal. I hadn’t had a cold in years and the last two months on Xgeva I had difficulty breathing. Been off it for almost 3 months and feel good.
What is your DXA T-score? It sounds like he's more worried about your metastases fracturing than bone fragility?
No clue ...Asked for one when he brought the shot up and was told doesn't matter you have mets on your spine . Last CT scan identified right L3 vertebral body measuring 1.2 cm x1.2cm. ...Oval lession T9 measuring 5mm-6mm. Other small spots here and there.on the spine..As for as T he hasn't felt the need to check it ever so no clue there . Been on Orgovyx for 3 months..Last time I questioned him he told me "Thanks for the help but I got this ". So not too receptive to me bringing things up..
When you refer to “T” are you referring to dexa T or testosterone.
Yes...I did misconstrued what Tall A was asking .I misspoke on that. I got the two mixed up but didn't bother to edit. Although I do not know either one as he's not check or thought it important.
Fun fact as they say. When I was reading the report I came across this . " The prostate is surgically absent". I have a prostate.
I was told by my ONC to get a cleaning and dental check first. Had a cracked molar and opted to just have it pulled. Dentist cleared me after two months. Oncologist made me wait another month before giving the injection. Ok so that's my experience but if my Oncologist said to start treatment now vs dentist, I'd follow the advice of the oncologist.
As long as you are hormone sensitive you do not need to start with Xgeva immediately. Better have a dental check first. Xgeva does not fight the cancer, it avoids bone density loss, a side effect of hormone therapy. Here is an image of the possible side effect ONJ:
ONJ
My husband just went off Xgeva after over 4 yrs on it due to ONJ. He had stage 1 ONJ- no surgery or treatment needed. Oral surgeon saw him once a month- waiting and watching for bone that was coming thru in his back left bottom jaw. Bone wasn't there at last appointment- oral surgeon says it can fall out on it's own and that's probably what happened. Sounds so weird but husband wasn't in pain or discomfort and gums had started to grow over area. Prior to starting Xgeva he did have dexa and dental visit to rule out needing any dental surgery- which he would have done prior to starting Xgeva. I'm not sure why you couldn't get a deep clean in the next week and then start Xgeva in a week as well. My husband and his oncology team say that his time on Xgeva benefitted him despite the ONJ. And his ONJ was caught early because he's great at seeing the dentist regularly, being aware of risks of Xgeva and paying attention to the symptoms of ONJ, plus the oncology team checking as well.
That all being said, your oncologist wanting you not to wait would cause me to listen to my oncologist. If you trust them and feel they have your best interest in mind.
Thanks for your reply. Both the MO and the dentist stated that I'd have to wait for at least 40 days for the shot due to the invasiveness of the procedure. I really don't know the extent of the spine Mets as far as danger for fracture. MO says recent uptake on my latest scan is the Chemo working. I usually get 15 min. appointments. The first half is him on the computer reacquainting himself with my case. The second half is him letting me know he's running the show.
Ugh- doesn't sound like you leave an appointment feeling heard. Hopefully he is a highly competent and knowledgeable in Pca. That can outweigh the manner of delivery sometimes. My husband has usually gotten deep cleanings at the dentist annually so he had probably had one recently (at least in the last year) when he went on Xgeva.
He has me on triplet therapy..I know that's the latest SOC for my situation. So I'm just doing what my my Pops who was a career military man used to say to his 6 kids. " You're to be seen and not heard'. I miss my Pop..Ill do just that at least until I finish out my chemo. Thxs again for your response.
You might want to at least consider changing. Sounds like a guy who, upon failure, just shrug and say that nothing in medicine is certain.
That's the plan..Right now options for care are few as I live in a smaller metro with few MO's. Currently starting my 4 infusion with this group so I'll finish up here and look for someone outside my area.. Either Dr. Norquest in Omaha or the University of Kansas Cancer Center. Thxs for your reply.
I have had only one Xgeva injection and now 4 months later, I have a problem with a back mular and it needs to be extracted. I also have periodontal issues. Got checked a few months before taking Xgeva and teeth looked ok . Wish I had never started it now. I’m very concerned about my jaw rotting off after oral surgery next week. Periodontal issues and extraction have a pretty high risk of ONJ . Much more than the 1% that was mentioned earlier
It is true that the incidence of OHJ is quite low overal for anyone and also for Prostate cancer patients. However, for those who have had bone strengthening drugs and then deep dental work such as extraction, deep cleaning, implant, root canal and so on then the incidence is far higher.
A sub group that is much, much more likely, and as such patients have said, ONJ is NO FUN.
rock and hard place. I had some careful dentistry done before starting xgeva and got a clean go ahead from dentist, mo, and orthopedist. A year later an old root canal went bad. I stopped xgeva for a full 3-month cycle before having it extracted, very carefully by a top oral surgeon. 9 months later, onj, bone coming thru the gum. Four months farther on, some of it has come out but there’s more. Oral surgeon and mo agree: anything they do only makes it worse. Can’t resume xgeva until it heals, risking the return of osteoporosis. No good answers here.
Damn if you damn if you don't. Seems to be a reaccurant theme with most of the treatment options with Pca. Thx for your reply.
Johnkelsy, thanks for the pertinent but unfortunate story. Please explain more about the ONJ healing process. Did you have any symptoms before discovering the bone coming through the gum? Did you receive any treatment to stop the ONJ? Could you detect when it started healing rather than progressing? Is it mostly healed now?
Maybe more than you wanted to know but here goes. All my adult life teeth have been a weakness, and when I had hormones if I came under heavy stress tooth trouble soon was likely. So root canals and crowns, with very regular pro cleanings and exams.
Due to Covid plus retirements I was bouncing among dentists, landing on my current general practice in fall 2022 and going in as emergency at year end. Rear upper right molar, 40-year-old root canal under crown had gone bad and was infected. Antibiotics then gently and carefully sectioned and extracted by a knowledgeable oral surgeon in February 2023, five months after my Fall 2022 Xgeva shot.
By late summer, six months post extraction, persistent pressure under remaining teeth, persistent clogged sinus misdiagnosed as infected, well maybe also but the cause was the bone beginning to die, general inflammation as a result. It showed up on my quarterly cancer scans. I made the dental rounds, new X-rays, looking back I'm sure the oral surgeon knew what most probably was up but he also knew there was nothing he could do that wouldnt' make it worse.
By the end of 2023 I could draw blood by sucking on my teeth but couldn't tell from where, then small bony spikes emerged right over the healed extraction site. Lately to my tongue it has felt like the end of a pencil after the eraser falls out, short round and sharp. More annoying than painful but always there.
Late 2023 I asked my long-time MO at Fox Chase in Philadelphia, during my quarterly in-person appt, to please phone the oral surgeon and agree on diagnosis and treatment plan, which he did on speakerphone and amazingly got through with only a short wait. They agreed to withhold Xgeva until healed, while I kept it clean with brush floss and water pick, and swab site 2x a day with chlorohexidine, and wait. Come back every 4-6 weeks. Standard treatment I realize now, but until that appt I was having a hard time getting clean information.
Last week, 13 months post extraction, I sensed it had changed again and two small grain-of-rice-sized bits of bone came out on the dentist's swab. Maybe half has yet to let go. They call it 'sequestration.' Come back in a month.
Meanwhile I had resumed Xgeva several months post extraction when everything seemed healed, and had a second shot in Fall 2023 before this really flared up. I won't get another until it's fully healed now, maybe summer? I went on it in the first place after several spinal compression fractures, themselves a painful consequence of cancer mets, meds. and radiation, Xgeva seemed to help with that so I don't see much choice but to restart when they think safe.
So that's my story, detailed here for the first and last time anywhere, I'm grateful for that speakerphone call because medical docs and dentists don't really share notes and records. BTW I was diagnosed with stage IVa PCa in spring 2018, six years ago. I'll have to let y'all know whatever happens next.
Johnkelsy, thanks for the through explanation, which answered all my questions. I think your ONJ history, while unfortunate and a miserable experience, is helpful for many uf us to understand because there's so so much inconsistent information re ONJ potential for PCa patients with bone mets taking Xgeva, Prolia, or zoledronic acid. I'm in that category and I have an appointment for a root canal tomorrow. Both my dentist and endodontist dismiss my ONJ questions with "less than 1%".
Good luck recovering completely form ONJ and living a long time with PCa.
re your dismissive 1% dentists... I asked the oral surgeon for a referral to a general dentist who understands ONJ. He said there aren't any, they're all terrified of ONJ and want nothing to do with it. Also it was revealing when my oncologist polled his colleagues for their treatment advice: they all had extensive experience to contribute. You don't get that on 1% populations. In our subpopulation of old men with PCa and bone mets, the risk is a lot higher than 1% and I really wish the docs and dentists could step up and cop to it.
I was considering putting off my extraction for a month or 2 if it would help with the odds of not getting ONJ, but after hearing your experience, it doesn’t sound like a couple more months would make any difference.
I think that in many onco clinics older patients are treated condescendingly.
If you want to change that,
(1) read up on trials pertinent to your case particulars, treatment arc, etc. Have notes and questions ready that refer to those trials (eg LATITUDE, CHARTED, etc, etc.)
(2) be aware of the latest options for cases like yours in NCCN/ASCO guidelines, and discuss them in your doctor's terms
(3) request to be respectfully addressed as say "Mr. Smith" instead of the presumptively familiar use of just your first name.
The older I get the more I notice the initial condescension tied to using my first name from someone talking down to me.
Hi APK3,No about the cleaning. I'm sure he had dental work in that time period.
I wanted to let you know that my husband was on Xgeva for well over the time frame...I think about 9 years and the doctors said he had miraculous bone healing from the Xgeva. Wishing the same for you.
🌻Jackie
what is the T scores from your dexa scan? I have bone mestasis but after almost 2 years of adt my BMD scores are normal. No Xgeva for me.
I have no clue. I've asked my MO for one he dismissed it and told me,," Irrelevant you have bone mets on your spine". He's not one that wants input from his patients.
Wow, I’d fire him in a heartbeat. Seriously. I am taking low dose abiraterone. I presented my opinion to my MO about it and he said it was worth a try. I also suggested Xgeva once every three months instead of monthly and he agreed to that after 6 injections. I stopped after 4 and I found I had normal bone density. Xgeva has a half-life of 30 days which means when you have the first shot you have 100% in your blood. 2nd shot you have 150% of a full dose. 3rd shot you have 175% of a full dose and the day you have your 4th shot you have 187% of a full dose. By the way if you read my bio you’ll see my Psa was 5664 with bone Mets to spine, ribs, femurs, pelvis and lungs. If you are on ADT there are two tests that must be done. A Dexa scan to see if the ADT is lowering bone density and Testosterone to make sure the treatment is lowering testosterone. That is on top of metabolic profiles to watch liver and kidney function. Best of luck, God bless.
Thank you for your reply Professorgary. I'll see him in about two weeks after today's 4 infusion and just let him know I want the Dexa and the Testosterone numbers . I'll bring up the Exgeva accumulative dosage also. Maybe we will fire each other who knows.Thanks again
Your M.O. = irrelevant, condescending PRICK.
Good Luck, Good Health and Good Humor.
j-o-h-n
pakb..kinda nailed it in the tread above "Highly competent just bad delivery ". I'm just used to my PCP spending time to explain things I'm not clear on. I'm a retired mailman with not much medical knowledge nor had any real reason as I've been pretty healthy for my adult life until I was dx. Being rushed through my appointments with an expiration date on my head kinda caught me off guard. The waiting room is always packed with cancer patients so perhaps that's part of the thanks for stopping by situation. Thxs for your reply j-o-h-n.
I think you meant "tired" not "retired"............ Mail carriers need medals....(and of course Christmas gratuities). Where the hell would we be without you all, especially us older folks who are waiting for "our checks".
I guess they need more doctors to share the load of paYtients they process.
Keep up the good fight and I leave you with one question. Without looking this up, tell me what "Zip" code stands for. God Bless...
Good Luck, Good Health and Good Humor.
j-o-h-n
Too funny Zone Improvement Plan... although it seems not be working lately.. My last bday card to my son in law took 3 weeks to go 351 miles.
Pretty sure I could of walked there in that time. At least in my prime.
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