I found out only 1.6% who take zometa have a jaw issue ok I can live with those odds although I understand the 3 to 4 week infusion outcomes are comparable to the 12 week infusions. 2016, rad prostectomy. 2017, 37 sessions radiation. Lupron casodex, Recently diagnosed with L3 lesion after zytiga failed to keep PSA DOWN after 17 mos, SBRT, Lesion hopefully gone. Currently on xtandi and last PSA 1.5 from 5 plus. My oncologist suggested zometa. She also mentioned my options for treatment are limited and she hoped for a longer run with zytiga. Clinical trials and chemo are left on the table and additional SBRT as needed. Question: can someone give me the skinny on zometa. Question 2. Are my treatment options that limited at this point, I feel really good I lost a considerable amount of LBS. Vegan diet. Exercise etc. Thankyou
Zometa was suggested today Although n... - Advanced Prostate...
Zometa was suggested today Although need clearance from my dentist because possible jaw side effects.
Zometa has just as good outcomes with 12 week intervals, but lower risk of ONJ. I'm doing it every 12 weeks when I get my Eligard (ADT) shot.
After second-line androgen deprivation therapy becomes ineffective, the best option left after that is chemotherapy: first-line Docetaxel and second-line Cabazitaxel.
If you can have molecular testing done, you might open a treatment option depending on what mutations you have.
Beyond chemotherapy, you can sometimes get another response out of an androgen blocker after chemo.
Then there is LU-177, still considered experimental in the US but hopefully approved soon. If you can afford to travel and pay out-of-pocket it's available in several countries. There is Xofigo for bone mets only. And of course there are various clicnical trials.
I recently had molecular testing I believe I have the unfavorable one Tp6 my oncologist has a very thick accent sometimes hard to follow. All I know is she said only 20% of prostate cancer patients have this mutation. A sure sign of aggressive cancer which Is no big revalation although helpful for future treatments. I keep seeing posts on this LU -177 what sucess has there been with that. Thankyou.
Here is some information on a completed phase 2 trial. The much larger VISION trial is ongoing, but we don't have results yet.
Gregg...I like the idea of Zometa every 3 months.. At some point when I need it , I will go for 3 month cycles. presently mt DEXA scan is good with T score of minus 1.6.
Do you have any study which says 3 montly cycle of zometa is as good as once a month. ?
Please let me know.
Yes there is a study somewhere, you can probably search and find it. My understanding is every 3 months for 2 years (no proven benefit beyond or more frequently) and after CRPC. That's what I'm doing.
I'm almost done, I think there are one or 2 more max.
Thankyou sounds like my plan possibly
I get Zometa monthly for the last 14 months. I’m on Lupron Xtandi as well. Message me for more detailed info about Zometa side effects if you want.
Jaw wise , I experience some TMJ mandible irritation , just today I went to my dentist for some panoramic x-rays to make sure I don’t have bone to bone contact in my left mandible joint, in advance of my infusion next week. You will need a small blood panel 3 days previous to the infusion. They won’t administer the infusion without it due to dangers, they could if they contact your prescribing physician. It takes 5 weeks absence from Zometa to be safe.
In any event , you cannot allow any contact or dental work , including cleaning , in your mouth after you start on Zometa. Horrendous bone necrosis can result. I have PCa friend with a LOT of metalwork in his jaw from bisphosonphate necrosis.
Your infusion clinic will tell you this anyway, but load up on otc flu meds before you go in and bring something to Guzzle / drink after you leave. I like those grape flavored sports drinks. You’ll want to drink several of those after the infusion to rinse the Zometa out of your organs as quickly as possible. The side effects if you get them ( message me ) last me 5 to 8 days after infusion. I know two people that have them for two weeks or so.
Zometa is vitally important to you and you should get it if at all possible . There can be some rough edges with Zometa but the value far outweighs the side effects and dangers. I wouldn’t want to do without my Zometa infusions , I have so many mets , it’s critical for me.
Peace brother ✌️✌️✌️
This information is very helpful what's next for you. Is LU-177 on the table. Have you done chemo yet. That's been my least desirable option considering at 58 yrs of age It has been traditionally the last battleground for many friends and relatives over the years. Honestly I have had cancer for almost 4 years. But until that met appeared it wasnt dreadfully as real as it is now ,And yes I know it could be worse and I am grateful for my care and support. But I'm having too much fun to leave now, I wanna see much more grey hairs and my family agrees. Thankyou
My Lupron Xtandi Zometa is holding right now. DXed 14 months ago. Been undetectable for 9 consecutive months but VERY tough time with the adt. Next will be Zytiga and prednisone . Starting psa 1400 - 1600 , body and joints literally paved with mets. Long discussion of entering Hospice when first DXed. They caught me way late , 73 years here. Just taking it a day at a time , trying to enjoy my remaining time with my wife and trying to stay as physically comfortable as possible along the way. Doing great considering.
You are younger than a lot of us ... stronger and more fit ... all kinds of new treatments available and more coming ... lots of reason for some optimism for a younger guy like you. Heck I have a PCa buddy that has had it for 22 years , is out of options and psa in the mid 250s now. He’s still hanging in there fine and doing fairly well ... you’ll be hanging in there for many many years . You aren’t going anywhere ....thereze lots of treatment possibilities remaining for you like Tall Allen says.
Peace brother 💪💪💪💪✌️✌️✌️
Thankyou for your encouragement I'm sorry about your extensive Mets. I would settle for half of 22 years. But when that time arrives I'm sure I'd want the other 11. I guess I'll get what I'll get, although I dont want it shortened by poor decisions thanks again.
I had heard no invasive dental work. Are you sure they recommend against teeth cleaning too?
It’s up to your choice what you allow. Heck it’s even possible to fall down and bump your own chin on something . Anything that disturbs the bone structure there is risking necrosis while using Zometa. Stabbing the mandible with a steel tool while scraping the base of a tooth is risky. You would make your own decisions as to what or whom you allow in there. You can take a five week break either way and be safe if you wanted.
I just had an oral panoramic X-ray yesterday to look for bone joint health , oncologist worried about my TMJ and bone erosion. Adt has caused pieces to crack off my teeth by making them brittle. My oncologist is pretty fanatical and insists that I get my infusions, hates it if I need one of those breaks for something.
I use one of those electronic toothbrushes and haven’t needed a full dentist cleaning in many years. My dentist is impressed with what the latest blue tooth tooth brushes are capable of.
Zometa can cause fractures ,like with your teeth , in your hip , thigh or groin and you have to look out for that too.
😁😁😁😁
I’m confused. I understand the teeth and jaw thing but I thought the whole purpose of zometa was to strengthen your bones and avoid breaks.
Schwah
That's what I thought as well does it in fact combined with Celebrex extend survival by 22% as a result of possibly not breaking your hip or any other bone damage misfortune you encounter. ostio etc.
Just realized a link was sent pertaining to this subject
Yea that’s right , your cancer eats away and weakens bone material if you have bone mets. Zometa hardens it back up and restores the damage. The down side is that Zometa , like many similar drugs ie: Prolia, makes your bones brittle and susceptible to cracks or breakage , plus Zometa is known for bone pain. Zometa causes fractures mostly, as opposed to fullbreaks with something like Prolia. My oncologist said I’d probably experience thigh or groin pain for weeks to months .... symptoms preceding a femoral fracture. This is just my clumsy explanation, google “ bone fractures with Zometa “ for much better presented material yayahahahaya.
Peace for you brother ✌️✌️✌️
I can’t post links with my phone but search Google for “ Harvard Medical School, thigh fractures linked to osteoporosis drugs, Long term use questioned “ that’ll bring up one good one . It specifically mentions Biphosphonates .
Well with prolia I can expect full breaks compared to just fractures . Tell me the good news?
No ... yayahahahaya... I think You have to fall down for that to happen , something like that with Prolia. With Zometa it just gets severe bone pain and a crack develops, probably fall breaks as well. I had and an aunt and mother in law both taking bone strength infusions , both had falls and both experienced a broken pelvis bone ... one a leg socket break, one just a break. One had their left leg socket rebuilt, the other a metal plate and screws.
I think it’s mostly about using those treatments like Zometa too long .... they work great but what do is more brittle than normal bone after a long period. Like everything else , nothing is perfect. Yayahahahaya I’m not giving up my Zometa unless I start experiencing the grinding bone pain my oncologist coached me to watch out for.
Danged if you do, danged if you don’t brother.
Read that Harvard article I referenced .
😂😂😂😂
There are documented cases of MRONJ without any dental treatment. I've never seen suggestions that dental treatment not involving bone is a significant risk.
The concept of "drug holiday" to prevent MRONJ is controversial. Bisphosphonates can persist in bone for years.
Think of that 19 year old dental assistant in your mouth with that sharp stainless steel instrument, scraping and scraping on the bottom of your teeth at and below gum level. If you are comfortable with that while on Zometa , no problem, I’m not good with that myself. My oncologist says “ no one “ even close to working inside my mouth. He’s the doc, I do what he says .
Drug holiday ? .... I would like a Lupron -Xtandi drug holiday because the side effects have debilitated me to the point of needing a wheel chair and being worried about stroke or heart attack due to physiological strain. I would not like a drug holiday from The Zometa if I can avoid it , I have massive bone involvement with PCa mets ... I need all the Zometa I can get to keep my spine and thorax from crumbling and compressing.
💪💪💪👍👍👍
I hear you. I should say that my late father was on Zometa a couple of years, and I did routine dental treatment for him without complication. That did NOT involve extractions or other procedures involving bone (though he had significant periodontal disease).
He was taken off Zometa when his kidneys started to complain.
it can get squirrelly, when you are in someone’s mouth that has had long term Zometa I suspect. I already have several teeth that have substantial pieces cracked off them ( might be more about Xtandi than Zometa, initially , on that ) . I think I may have a tooth or two getting loose as well , and even tho my panoramic X-rays don’t show much except a hefty sprinkle of little tiny mets all over my mandible , to me ( what do I know ) my X-ray looks to show my left mandible hinge end about 30% smaller than the opposite side. I did ask my cute dentist to check them against last time 12 months ago ... she thought they looked alright. This lady see’s thousands of them all the time , I Defer to her good judgment . Yayahahahaya
I was the supervisory biomedical engineer for 22 years at the Fresno V.A. and for 10 years before that at Darnall Army Hospital in Ft Hood, Tx. That was long ago enough that I still remember tube Burdick EKG machines on roll around carts and GE brand ICU monitors with the bouncing ball screen that made “ clicks “ for every qrs cycle yayahahahaya yayahahahaya. I haven’t even been back inside the building at the V.A. In nearly 25 years now.
👍👍👍
It's been about 25 years since alendronate was approved (I don't remember when exactly the IV bisphosphonates were introduced), and personally it's depressing how little is settled about treatment protocols for dentists when treating patients on bisphosphonates. Initially there was a tendency to treat similarly to patients who had received radiation therapy to the head and neck. When I was in school most patients were advised to have all their teeth extracted beforehand. This isn't much done anymore. Likewise, there is no real agreement on the ideal treatment for MRONJ once it has occurred.
I recently saw a patient who is to go on Xtandi for metastatic pc; I sent him to the OMF surgeon to have 3 teeth in bad shape removed (they needed to come out anyway; that he was going on Xtandi only encouraged him to come into the office). From what I know of denosumab, it seems that treatment should be possible with a not terribly-long drug holiday. But the surgeons don't seem to be consistent here either. We could all use a bit of better guidance.
💪
I already have TMJ would that be a disqualifier for Zometa
I’d think that depends what is called TMJ and what you have. Do you just have the inflamed mandible muscles and jaw discomfort or do you have full bore jaw locking up and can’t close it , and / or dislocation of the mandible etc. If you have any bone on bone contact joint deterioration then you can’t do Zometa. If it’s just inflammation and or muscle Cartledge pain , then you should be ok. In either event you would want an oral exam and panoramic x-ray and have it looked at by at least a qualified dentist with a possible referral to an oral surgeon for a more informed opinion. Zometa jaw necrosis is a very serious big deal and you have to take care with it,
Thursday morning I had a panoramic jaw x-ray and had it looked by a dentist that didn’t see anything that concerned her ( easy for her to say yayahahahaya ) but she gave me an open referral to an oral surgeon anyway if I felt the need. I’ve been on Zometa for 14 months and my left mandible joint is tender and sore and makes loud squishy noises when I eat ... sometimes I think I hear / feel something that is like bone rubbing on bone. I’m due for another blood test / Zometa infusion next week and kinda Leary of the infusion ... guess I have to trust the doctors ... whatever. Still my left side is sore and squishy yayahahahaya. I totally need - want the Zometa infusion tho ... nasty as those are to me ... I feel like I’m in limbo with this. Yayahahahaya
Peace brother ✌️
Most symptoms of so-called "TMJ" involve spasm of masticatory muscles. Ordinarily, there is a fibrocartilage meniscus between the mandibular condyles and the glenoid fossae of the temporal bones. I have never heard that "bone on bone" is a contraindication for Zometa--have you seen a reference?
I think I’ve already said “ it depends on what is called TMJ and what you have “. I said in the same post , as I’m doing .. if you think something is wrong in your mandible and you are on or thinking of Zometa , contact your medical team for their advice and guidance. Google is your friend, Zometa is known to cause bone loss in the jaw ( osteonecrosis ) , the longer you use it the more likely it is to happen. There are literally hundreds upon hundreds of warnings about it on Google. An average person wouldn’t likely know the difference ..... as I said above, contact your medical professional care team if Zometa is involved was my advice.
✌️
One of my best friends ( Urang on this group ) has already had massive mandible destruction and oral surgeries to repair his extensive damage caused by Zoledronic acid, I promise you’d want to take every precaution to make sure that didn’t happen to you. Wouldn’t it make sense that if I think I hear bone on bone noise in my mandible , that necrosis may already be in play after 14 consecutive months of Zometa and I’d want to have it checked out. If I do have necrosis, then Zometa is over.
Search google for ncbi .nlm.hih.gov , “ Dental complications and management of patients on Biphosphonate therapy, a review article. “
Peace brother ✌️
Most noises in the TMJ area are not due to bone-on-bone contact; they are due to irregularities or dystrophic changes in the meniscus. A decent panoramic radiograph can usually clear up whether there are organic changes in the joint.
I am a dentist; I'm pretty familiar with the issues regarding bisphosphonates and MRONJ. While other antiresorptive therapies (such as denosumab), antiangiogenic therapies and m-TOR inhibitors supposedly carry this risk, I would expect that risk to be considerably lower than with the IV bisphosphonates. Bisphosphonates have as well been associated with "atypical" femur fractures, but this is rare and isn't much discussed.
Love this forum, to hear first hand from a dentist on the frontline. Thankyou
I assume a DEXA scan said your bone mineral density is low. Talk to your oncologist about adding Celebrex to your Zometa for a possible 22% increase in survival:
ascopubs.org/doi/10.1200/JC...
After Zytiga and Zytiga+dexamethasone, you have docetaxel, Xofigo, Provenge, Xtandi and Jevtana already approved. A biopsy may open up new avenues. Lu-177-PSMA in Germany is a possibility too.
No DEXA SCAN Should this happen before I consider zometa will discuss Celebrex as well. Thankyou
Definitely, there's no point in taking a drug for a disease you don't have. A friend of mine, who has been working out at the gym for many years, has excellent bone mineral density, and doesn't need Zometa.
That message is crystal clear to me Although my oncologist made no mention of the test. Fairness to her she may pull it from her sleeve later. Thankyou Tall _ Allen
Tall_Allen I spoke to onc doc and she said the reason they had decided to put me on zometa was the bone met to L3 to shore up that bone that's had SBRT, Does that sound right? to you , I did request a Dexa scan regardless. I also suggested based on the study that would every 3 mos suffice since theres no measurable difference to once a month.
It's true that SBRT can weaken the bone. "Vertebral compression fractures (VCF) constitute another concern with SABR for spinal metastases. At some institutions, multifraction schedules are preferred, because evidence points to a higher VCF risk with single-fraction SABR schedules of 20 Gy or greater, although the data also suggest improved local control rates with larger single-fraction SABR schemes.15,21 Using high-dose single- fraction treatments and accepting a higher risk of VCF is easier with access to a comprehensive spine surgery program that can address the consequences of fracture or proactively reduce the fracture risk. Currently, the optimal multifractionation regimen for spinal SABR remains undetermined.
jamanetwork.com/journals/ja...
It sounds reasonable that Zometa can mitigate the risk of VCF from SABR (SBRT).
Hi TA
From what I read on this site about Zometa:
Zometa is used to improve bone health so presumably can increase bone density and prevent fractures.
When does Zometa fall into ‘ you should take it’/ standard of care? It does not appear that you should automatically
go on Zometa after stereotactic radiation of a spinal met. But if your bone density is or becomes low then it should/can be added, and by what you say add Celebrex as well.
I had SBR 70GY in 5 fractions on my 2cm C3 tumour. I was told weakening of the bones around C3 due to the radiation could cause a fracture/ make me susceptible to fractures down the road. Zometa never entered the conversation.
It also appears Zometa is given to mCRPC not to hormone sensitive., where data does not show benefit of Zometa.
Both myself andCostarica1961 are still hormone sensitive.... would you agree? Costsrica1961 PSA rose to 5 on Zytiga but after SRT and switch to Xtandi PSA is now at 1. My PSA continues to be 0.01.
In my case a ChromatograninA test for neoendocrine was negative but my understanding is this test is not completely definitive.
So both me and Costarica have had just a single big 2cm tumour grow while on Zytiga but after SRT we can continue to be hormone sensitive for hopefully many more months...
"I had SBR 70GY in 5 fractions on my 2cm C3 tumour." I'm pretty sure that can't be right.
"It also appears Zometa is given to mCRPC not to hormone sensitive., where data does not show benefit of Zometa." It's not that "data does not show benefit" it is that there is no data.
"Costsrica1961 PSA rose to 5 on Zytiga" That means he is castration resistant.
TA
I believe I had around max radiation allowable to C3 and believe this was 5 fractions for a total of around 70GY.
On this site I see people giving different definitions of Castrate Resistant. I AM NOW CONFUSED!!
I thought that if the PSA was controlled at a low level with no doubling above PSA2 by using ADT including Lupron, Zoladex, Zytiga or Xtandi etc this means hormone sensitive. But does this exclude the secondary ADT drugs like Zytiga and Xtandi? And what about appearance of new Mets with PSA<2?
Costarica now appears to be controlling his PSA at <2 using Xtandi I appear to have wrongly concluded that he is back to being hormone sensitive.
In my case I had spinal Mets at dx, went from PSA74 to 0.01 on Zoladex and Zytiga but had a growth at C3 zapped by SBR.
What is your definition of Castrate Resistant and Hormone Sensitive?
CR 1961 : Man, you scared hell outta me! Zitiga let me know hell was in me! Sooo we’ve been there. Just saw my past ... briefly. 2yrs + and psa stable @ one ... sooo the future projection looks like yours for me. Oh my ...
As they say we all are different in this PC world my oncologist expected me to last a great deal longer on zytiga. Oh well next.
I am doing zometa and added Celebrex after tall Allan showed me the study indicating 22% lower death rate with the combo. My MO gives me a reduced dose (about 75%). His Group sees hundreds of patients and he says about 2% had Jaw issues at full dose and virtually none at lower dose. No real side affects for me.
Schwah
When you refer 22% lower death rate is this as a result of strengthening your bones, with zometa and Celebrex. or is it The PC IN general. Thankyou
They aren’t really sure. They saw no decrease in deaths with either on its own. Only the two combined. Apparently there’s some synergetic advantage of the two together.
Schwah
Hi Costa 1961
So I am 58 on Jan 22 and we have viewed each other’s posts for a while.I have been on Zytiga 24 months now. Last PSA 0.01. It rose briefly to 0.03 in around Feb 2019. I attributed that to a 2cm lesion at C3. I asked to zap that with SBRT. My MO and RO wanted me to go on chemo and were concluding Zytiga was failing.Like you I view chemo as a last resort as I view it as adding poison to the whole body without it being ultra selective or a cure. My SBRT at C3 in June 2019 was probably successful as my PSA has been 0.01 since.I switched to Zytiga 0.5 mg dexamethasone in around October 2919 as research data indicates prolongation of Zytiga with dexamethasone.
Did your PSA drop to 1 because of Xtandi or because of SBRT to L3?? My understanding is only around 20% of people respond to Xtandi after Zytiga has ‘ failed’. So are you LUCKY Xtandi is working or would Zytiga still work after your SBRT?? Or Zytiga and dexamethasone?
I think being younger ie 58 instead of in our 70’s and with low PSA’s gives us more chance that we can survive longer ( than the 2 years our MO/ urologist gave us ... hey we are already beyond that!!!!).
I would do Lu177 but probably Ac227Lu177 combo if it was Standard of Care. I’m in Canada) but travelling to say Germany and spending US$tens of k for a few treatments . ...is it worthwhile??
I look at data and Lu177 looks as if it reduces PSA in a good percentage of people ... but these people are typically older than us and have much higher PSAs and in quite a few cases it looks as if PSA can start rising again within a number of months. We are still waiting for Lu177 VISION results. But for us with low PSAs and what I think are a bunch of dormant/ non detectable Mets with also mets that begin to bypass secondary ADT, would Lu177/Ac227 zap them and give us years as opposed to months of OS ( overall survival).
Your thoughts ( and anyone else’s!)
I have considered LU_ 177 I need to learn more about it . And funds are a consideration. The xtandi brought my PSA down. Are paths seem very similar. Lots of big decisions to be made for both of us. Be your own advocate and question everything. These are meaningful significant steps we will ever take.
And I wanna keep steppin.
Best wishes
As I read these posts, it amazes me the strength and determination that you men show. It also clearly demonstrates just how ugly advanced prostate cancer will become as time and it chews away our bodies. As I had noted in previous posts, pc is a fairly stable and predictable disease in terms of progression, with minor exceptions, so what you are all doing is building the library for those who follow, and it would be good to have this set as a template, which is what in fact that you are collectively doing by making your posts herein.
For those who are older, then having the end in sight is not so bad, but the getting there is horrific. For those younger men, it is a tragedy of epic proportions that should have our society scream to the rafters at the injustice of how poorly funded, Advanced prostate cancer research is and the little that it obtains.
Further, it shows my major complaint that ALL research facilities must be forced to share data and test results with each other, so that their individual efforts can be built upon quickly, instead of the current ad hoc manner, for which we, as patients end up paying for with our lives. Your sacrifices, as with those before us, will at some point in time, serve to save the next generation of men, who would otherwise fall as we are falling, so remember that your efforts at extending the time alive, will be rewarded by saving our sons and perhaps their sons, as at some point, we will beat this damn disease.
In conclusion, you are ALL brave souls and represent the best that we have, and are to be blessed and honoured for your heroism in face of such a force of evil, as PC is to so many.
Live large boys, make each day count and may you not suffer as your time winds down.
I’m screaming from the rafters! 😂😂👏🏼👏🏼
I thank you for such encouraging words.. Be well 😎
When it comes to pain control, relief at the end stage of pc, my view is there is no limit, nor boundary, one has to do what has to in order to get some relief. Be it weed, or oxycodone-quick release is my drug of choice because in knowing that no matter how bad the pain, I can get relief with its use in a matter of minutes so I can endure pain longer because of having that knowledge and I think that is huge.
I do not take reg oxy because it has some bad side effects including ending up having less effect and more need to take it all the time, and thus more side effects. That said, I am not yet at the stage where the pain is one constant beating on the body and brain.
That’s good!
Well truly if good outlooks are a partial or complete cure then you're gonna be fine.
If?
Great message. As long as we stay informed and make informed decisions about our health and well being, as our own advocates, we cannot be defeated because at the end of day we all will truly know we did all we could with the information at hand.
That is our reality, not how we would like to have things but such is life. The key now is to set up the rest of our lives to live as best and large as we can for as long as we can. That in and of itself is the one victory that we can take from the deck of cards dealt us!
Well buddy , you more than anyone , realize what a lucky guy you are to have that incredible main squeeze ... and a lotta good years remaining ... you’re not going anywhere for a good long time .
We got right now and tomorrow will come when it gets here ....no biggie. We just have to get up off our poor pain encrusted.. exhausted butts and have some fun doing something we like. You got your best friend there to share your fun with you , makes it twice as good. Go smell some roses .... well sniff some cactus yayahahahaya... and get with it brother. Right now I’m just chill’in and finishing off the bottom of the pitcher in my Margaritaville machine .... who knows might stuff some more ice in there and rev it up again. Yayahahahaya. Yee haw .....
Love ya brother 😂😂😂😂😂
Thanks for this post . I just re read it . Kind of you , thanks .
Pura vida
Continue the good that you’re doing .. we can t give in..
Did your prolia help with any muscle and joint pains
Go for it I will. Thankyou
Good luck with everything .. This was a great post . Thanks
You as well.tommorro zometa and lupron and PSA.
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