interested in hearing opinions about the risk/benefit of Xgeva bone med.
I had one dose of the drug earlier this year and had to stop for a tooth extraction because of the risk of necrosis of the jaw. My onc is wanting to restart the drug, but with side effects ranging from fractured femur, broken spine, and necrosis of the jaw, I am very suspicious of Xgeva and worry the risks outweigh the benefits. With all the various risks to bone, I’m not even sure what the benefit is supposed to be…
Hi Joeguy,
Bone mineral density medications are a perplexing addition to the meds that our MOs want us to take as part of our PCA care. I can only tell you about thé decision that I made and why, and my decision is contrary to the SOC recommendations. I did a lot of reading of medical journal articles about BMD loss, but I decided to avoid those meds. I was diagnosed after a DEXA scan with osteoporosis following the accumulation of nine painful spinal compression fractures. I have not had any HT, so I could not make a cause and effect relationship between ADT and BMD loss. I attributed my osteoporosis to hereditary bad luck and whatever other unknown causes are for this nasty orthopedic disease. I have had extensive dental work over my seventy-seven years, and the fear of ON pushed me away from experimentation with BMD meds. I’ve read about and discussed the SEs that other members of the brotherhood have endured that they have attributed to the BMD meds and decided not to risk another medication. I’ve read positive and negative discussions about the benefits of BMD meds, and decided that I’d roll the dice and simply avoid adding those meds. I could be making a mistake, and it will not be the first time.
in my case, my latest Dexa scan did not show any osteoporosis, but I do have somewhere around 100 bone Mets. I’m not clear on if Xgeva is supposed to do something for bone metastasis, or if it’s just to prevent fractures if you have osteoporosis…
How painful are your bone mets and if painful what relieves the pain if anything?
The Mets in the lower back area are a source of constant pain. It is usually not severe, I would say about 4 out of 10, but can spike to an 8 or 9 at tim s for short periods. I use Morphine Sul ER 15 mg every 12 hours . Occasionally need an Oxycodone 10 mg in addition if pain has spiked.
I am taking 30 mg morphine every 4 hours no extended relief. Hopefully the pharmacy will have my Fentanyl patches tomorrow and I can use them for pain only needing morphine for break through pain.
My pain level is not severe but my reaction to pain when I walk is to stumble to avoid the pain and thi could result in a fall and another fracture. I do not like taking 180 mg of morphine but I can walk albeit badly and eliminate severe urinary pain. Hopefully the patch will be the answer. Have to go and try an enema to remove some shit rocks.
Good news today is that even though I can barely walk across the room, I can ride my e-assist recumbent trike for 1.5 miles with no pain at all. This has boosted my spirits immeasurably I will be increasing the length of the rides as weather permits. My Poodle Darcy thanked me for the ride and will hopefully thank me again by cuddling tonight. He is such a comfort it is difficult to explain.
From one Joe to another. If the Dexa didn't show osteoporosis, why are u even considering Xgeva?
I'll jump in and maybe get in trouble lol.
Because this isn't really about osteoporosis. Its bone damage from mets that needs repair from past and present met activity.
Ah, I see. I have oesteoporosis but no apparent bone damage. Hopefully it will stay the sa me
Thanks. Ya didnt beat me up lol.
I don't know but it seems like this topic comes up a lot but often the distinction between what it is being used for doesn't enter the discussions IMHO.
Yea I hope ya dont get into any bone mets/damage. Escape that SOB lol. Hang in there brother.❤️❤️❤️
This is a quote from TAllen in which he is pointing out its use to prevent fractures in men with bone mets but also as a side it can help when years of ADT and old age present osteoporosis But again there is a distinction between the need (met damage present and potential and then the other being osteoporosis.
The benefit is lower rates of fractures. Cancer in the bones makes them brittle and more likely to fracture. Also, long term ADT can lower bone mineral density, which makes them more liable to fracture. Fractures are painful and crippling
Osteoporosis and osteopenia are different beasts from weak bones caused by lack of utilization of calcium in maintaining bone strength. In spite of good bone density according to the dexa scan I will had pathological fractures to manubrium (breast bone) femur and C1 vertibra. I also have another possible fracture that might show up in an xray tomorrow.
Just our experience with Xgeva... My husband had stage 4... with bone meets in the pelvic area. He took Xgeva for at least 7 years. After about 3 years. The doctor said, he had a miraculous healing of his bones. He continued to take it up until a few years ago. He felt that he had pushed his luck enough and he stopped the Xgeva. It did it's job.
Best wishes Joe!
🌻Jackie
Hello,
In my opinion, it is the other way around. the benefits outweigh the risks. I was diagnosed with extensive bone metastasis (neck to my knees) eleven and a half years ago. My oncologist recommended Denosumab injections every six months and I have been taking Denosumab (aka Prolia or Xgeva in a lower dose) for nearly ten years, along with Calcium and Vitamin D supplements, for bone strength. I was told Denosumab was a much better choice than Zoledronic Acid and that the chance of getting necrosis of the jaw was about 1%. My dentist appreciated being told about the drug but was not overly concerned. Give it a try. You might want to look into a lesser dose with Prolia. Hope that helps!
thanks….. 11 years sounds like a very good run to have with extensive bone Mets. Are you still hormone sensitive?
Hello,
No longer hormone sensitive. Off all medications except Zoladex (Goserelin) which I have been taking for my whole journey (11.5 years and Prolia (Denosumab) for about eight years. Lutetium is keeping everything in check for now. Not sure what the next step will be, probably chemotherapy. Good luck!
Thank you for sharing this since my husband’s oncologist keeps talking about Zometa which is Zoledronic Acid. I’m going to let my husband know this and once he finishes with his dental implant, he can let his oncologist know that, too.
My oncologist tried to prescribe Zometa. I passed. I thought the risk outweighed the reward, at least at this point. I had my wisdom teeth extracted many years ago and the surgery went badly, leaving my jaw damaged. It’s a quality of life issue. If I only have 3-5 years, I’d rather not live those years with jaw necrosis where my jaw was damaged.
The benefit is lower rates of fractures. Cancer in the bones makes them brittle and more likely to fracture. Also, long term ADT can lower bone mineral density, which makes them more liable to fracture. Fractures are painful and crippling.
Thanks TA….. odd that fractures of the femur and spine are potential side effects for a drug designed to prevent fractures
It's important to distinguish rare side effects from substantial benefits. The net effect is fractures are prevented, if fractures occurred in patients taking the drug, they may have started too late, not taken enough, etc.
I was prescribed xgeva over a year ago and for some reason I only got one shot and it kept being forgotten. Finally had one about a month ago and it gave me horrible urinary pain which is one of the rare side effects. I was used to urinary pain due most likely to radiation cystitis but this was much greater.
My next shot is due in a couple of days and I was trying to decide if I should continue. In the mean time I had a spontaneous break to C1 so I guess I will continue xgeva.
I am now experiencing pain and weakness in my legs an arms and am having difficulty walking. Pain management is not going well and I am getting really depressed thinking it will be like this or worse until I can't stand the pain and immobility anymore.
It was good to hear of someone with bone mets for many years. Wondering about their level of pain and how it was managed.
Hi Joeguy,
Like all choices in PCa care, there are options of what we should and maybe should not do. Good luck with treating the mets.
Here's my $.02 on BMD and Prolia and PCA. We are already way out on a risk limb with a diagnosis of advanced metastatic PCA, which has a vicious way of causing worse breaks and also more likely. Especially with doublet/triplet therapy, virtually overnight bones will be 10+ years further along the BMD loss curve.
If one is unlucky and PCA goes castration-resistant, they are going to need all the BMD possible. It also will help should your PCA treatment need to intensify some day should it progress, where said treatments require a pretty strong constitution to even qualify for.
Eschewing Prolia means choosing to get bad bone breaks in the nearer future regardless of PCA cure/remission status. It is one of many lose-lose posers the Hydra throws in our way. Death by osteoporesis bone breaks is said to be miserable and slow.
Avoiding Prolia when one has PCA is like russian-roulette with multiple bullets in the cartridge.
Exercise/nutrition. The right kinds and amounts are your best tools to avoid BMD medication SE's along with getting the best benefit from PCA treatments.
Took Xgeva shots for about three years. Researched ONJ information. Ended up switching to Prolia, which is the same drug (denosumab) at a lower dose. BTW, published info re ONJ probability while on denosumab is all over the map. I have publications that estimate 1% to 23% (the 23% is after 6 years and is based on limited data).
My husband’s oncologist keeps pushing Zometa which is similar to Xgeva. But he was having some prep for a dental implant and actually has been hesitant about taking anything for fear of necrosis of the jaw. We read some horrendous stories. He still hasn’t had the actual implant yet—still procrastinating. And I know some of it has to do with the concern about the Zometa.
you might suggest Estradiol patches to your oncologist. Look up the PATCH trial been running for a few years from 2015 and latest results I think fairly recent from memory. Anyway good for bones!
Hi joeguy, I had a shot of that stuff and it made me feel rotten. I have osteoporosis and osteoarthritis and celiac condition. I have been taking pure Glucosamine for many years in an attempt to stabilise the bone density.
I have had two bone scans performed over the years at the same clinic, the last one was a year or so ago and it showed an increase in bone density.
The doctor couldn't understand why and I didn't tell them. I fully understand your anxiety over the drug and thats why I decided against it. We've got enough going on.
I hope this helps.
My husband was on Xgeva for over a year. He had extensive bone mets and never had any side effects from the drug. Despite numerous falls, he never broke any bones. I considered that a win.
Numerous falls, eh? A Jack Daniels guy?
No. Just very ill. 😔
I am very sorry for that. Boy, do I feel like an idiot. I apologize.
Boy did you step in the cat sh!t! Try those on j-o-h-n first.
He did, but I pardoned him.........
Good Luck, Good Health and Good Humor.
j-o-h-n
Imagine I sound like Jimmy Durante.
What a set up. What a set up. I'll tell ya. What a set up.
"Inka Dinka Doo" is a Durante original song and is usually sung when most doctors perform DRE's.
Good Night Mrs. Calabash, wherever you are.
Good Luck, Good Health and Good Humor.
j-o-h-n
Durante wrote the famous song that Doctor's are taught to sing when they perform DRE's, The song is, Inka Dinka Doo.
youtube.com/watch?v=6YCOIMk...
(Good Night Mrs. Calabash wherever you are).
Good Luck, Good Health and Good humor.
j-o-h-n
No need to apologize. I’m rather fond of Gallo’s humor (😂😂)
Dont see as much of you these days but I rank you up there near j-o-h-n in the humor dept.
So with so much humor spewed out the statistical probability of this eventually happening is not surprising. It can happen.
We had an engineer who was always accused of screwing up cad drawings. But then he produced 50% more drawing than the other guys. The law of averages was against him. Made him look mistake ridden.
I swear..... my ex-wife must have been his twin sister.....She even used to call me a Cad.
Good Luck, Good Health and Good Humor.
j-o-h-n
You may want to consider using all-natural estradiol patches or gels. According to the 14-year PATCH study, estradiol is safe and effective at doing ADT, and it can replace the use of Lupron-like ADT drugs. The PATCH study compared the % change in bone mineral density (BMD) for Lupron ADT to estradiol ADT and found that estradiol increased BMD by 7% after 2 years, compared to a -2% loss of BMD with Lupron ADT.
You won't need to take any Xgeva bone meds if you use estradiol patches or gels.
E2 Patches are NOT FDA approved, and MOST Oncologists will NOT recommend their use, even as a supplement to ADT. Personally, I think it's a money thing where Big Pharma is in bed with Big Medicine. My Oncologist flat out refused to even discuss it, citing Heart Failure studies from way back when estrogen was given orally to treat prostate cancer. My Oncologist also still wears a mask and does elbow bumps instead of handshakes and is oblivious to the relationship between myocarditis and the Mrna "Jab".
Your MO is not informed on results reported over the past 20 years. Oral estrogen was used decades ago, which caused higher rates of blood clots and CVE's. 20 years ago researchers started studying transdermal estrogen (estradiol, E2), and found conclusively that using the transdermal route via patches or gels caused no increased risk of blood clots and CVE's, because the transdermal route skips a first pass through the liver, unlike oral estrogen pills.
The phase-III PATCH study in the UK of over 2000 men recently concluded that after a 14 year randomized controlled trial (RCT), the metastasis-free survival probability of E2 patches for ADT was the same as Lupron ADT, and that tE2 ADT could replace Lupron ADT safely and effectively, while preventing hot flashes and osteoporosis, among other things.
BTW, my MO also refused to prescribe tE2. I just went ahead and got a prescription for E2 gel from my PCP, who is familiar with hormone replacement therapy.
Note: Estradiol is FDA approved to treat post-menopausal women who have hot flashes and osteoporosis. The PATCH team is petitioning the National Health Service in the UK to re-purpose E2 patches for men with PCa.
I shared the Lancet Report with him. He knows about the P A T C H study. That's why I believe it's ALL about the $$
I thought I was tough but you all are the toughest in this world.
Tough? This ain't nuttin wait till you see us at the Christmas party...
Would you please be kind enough to tell us your age.
Good Luck, Good health and Good Humor.
j-o-h-n
Your MO is not an expert on osteoporosis.
Ask your PCP for estradiol patches or gel to treat osteoporosis. You won't have to worry about jaw necrosis, then.
I did ask my PCP, she referred me to an osteoporosis and arthritis specialist, where we discussed options......e2 NOT being one of them. He wanted to seek approval for Evenity, which is another injection, similar to denosumab. However, Evenity does seem to actually rebuild bone when taken regularly for 12-24 months then tapered to a maintenance dose much like Prolia
My PCP prescribed it without question. Ask your local compounding pharmacist for a list of names of physicians who routinely prescribe hormones for their patients. They are out there...
I stopped Xgeva after 4 injections due to side effects. As soon as I stopped my alp started to climb. We decided to try again but every 12 weeks instead of every 4 weeks. Alp dropped and no side effects. Xgeva has a 30 day half life meaning when you get your second injection you still have 50% of your first injection in your body. When you get the fourth shot you will have nearly two full doses in your body. Studies have proven that Xgeva every 12 weeks is non inferior to every 4 weeks. Hope this helps, God bless.
I had Xgeva for about 3 years but MO stopped it because "Your teeth might fall out." Had a good laugh over that one. Extensive bone mets. Will have been doing this 8 years March, 2025. Believe I will ask for a restart of Xgeva after dental check up, etc after bone scan in Jan or Feb. Every 12 weeks sounds nice.
I was on Zometa for a little over 4 years. Stopped about 8 months ago per Oncology team (one of the visits where the Physician Assistant of Oncology saw me she convinced me it was time to get my teeth/jaw checked out). No jaw necrosis. First tooth for extraction took place a couple weeks ago. 2nd tooth will be pulled in about a week. 3rd one in a month and a half lol).
I was my these days too rude, blunt self. I told the dentist I thought I'd be dead before I needed to see a dentist again. But I did get a laugh out of them.
My dentistry is at a hospital school. They hover around me and get all excited when I come in. Stage 4 PC guy. 4 years on Zometa. Some of my mets are in my lower jaws etc. I'm a good specimen for them compared to the run of the mill patients lol.
Prevalence of Osteonecrosis of the Jaw [ONJ].
Xgeva
Xgeva and Side Effects
Xgeva experiences
New developments, Xofigo, Xgeva
