Just staring ADT (GS 10, bone mets, PSA 6) and supposed to get dental clearance for Xgeva. Having read all the serious horrible side effects I would like to know if anyone has tried to go an alternate route besides these powerful antibodies or maybe tried supplements for bones. The SE list is just too long and serious: lower immune system, femur and spine fractures, dead jaw bone, headaches, low blood count, low bp, anemia, etc.
Alternative to Xgeva & Prolia - Advanced Prostate...
Alternative to Xgeva & Prolia
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Back2future
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Hey guy! I didn’t want to use prolia either .but I m in painful osteopenia . I started up some simple bone nutrients and the prolia 2 yrs ago. My pain has lessened a bit. My latest bone density scan improved 10% up from the past losses of 25% in total. Even my naturalpathic doctor says it’s doing me good. He say that prolia itself has cancer fighting qualities. The bone deterioration is real. Get on board. No looking back . My dentist attempted to implant a post . The bone wouldn’t hold it. I’ve got a gap in my teeth first time since childhood. Weight bearing exercise and nutrients can help us . Good luck .. I would follow your doctors advice. It can help you ..
michael00 in reply to
I used prolia for 2-1/2 years. First bone density scan with bone mets said osteopenia and spine too involved to rate. Newest scan says normal denity including spine. They are now taking me off prolia.
Read the side effects on ADT and it’s scarey .. I think it’s better to be proactive with bone loss .. I waited 4 yrs until I started nutrients and prolia. I shouldn’t have . Take care
Back2future in reply to
I read Prolia is used for PCa without bone mets and Xgeva with bone mets.
in reply to Back2future
That’s what I’ve heard also. 😷✌️
Hello, I am not quite sure that is right. I was diagnosed with and still have extensive bone mets and I am on Prolia (denosumab). I have been on Prolia for nearly eight years. I found the side effects to be minimal. The issue is not whether or not you have bone mets but rather how active are your bone lesions. Remember Prolia and Xgeva are the same medicine (denosumab) but in different amounts. I receive one syringe 60mg/ml of Prolia every six months subcutaneously. That is considered to be a maintenance dose. I also take Calcium and Vitamin D to maintain optimal calcium levels. Osteonecrosis of the jaw is a real but very rare side effect of Prolia and Xgeva. I was told less than 2% or less than one man in fifty. Tell your dentist. Hope that helps!
I will tell dentist tomorrow. Yes, I read Prolia is less dosage. How often do you take bone DEXA scan? With bone mets and 8 years? May I ask what meds you took.
Hello, I have a bone density scan once every two years so probably have had about four altogether. As for meds I have told my story on Health Unlocked many times. I was diagnosed in May 2013 with multiple bone metastasis but fortunately no soft tissue involvement. My PSA at diagnosis was just below 1700. The biopsy of my prostate was 8 (4+4). My family doctor referred me immediately to an urologist who, in turn, referred me to an oncologist. He put me on Zoladex (goserelin) and I have been on that drug ever since except for a year or so when I was on Firmagon (degarelix). The MO also suggested taking Prolia to avoid any fractures or Skeletal Related Events (SREs). Three and 2/3 years ago we added Xtandi (enzalutamide) to the mix. I started Xtandi in early September 2017. Those are the three drugs I am currently on. Fortunately no serious side effects from any of them. Hope that helps.
2%?.. I got Osteonecrosis from Xgeva.So I was in that 2%!.
I read up on the odds of getting dead jaw bone, some say as high as 8%.
History of dental disease. current issues and having cancer may bring you into the 8‰.
Incidence of ONJ is proportional to length of treatment. This is why "drug holidays" are done. To my mind this makes a lot more sense for denosumab than it does for bisphosphonates like Zometa, which has a far longer half-life in bone.
I have no bone mets. My MO placed me on Xgeva.
Have you been diagnosed with osteoporosis on a DEXA scan or are you mCRPC? You may not need it.
No, but ADT causes osteoporosis and was advised to take it.
It may cause osteoporosis. I know several men on ADT who work out hard and have + bone density on a DEXA scan in spite of ADT. If you are hormone sensitive, you can possibly delay use of a bone-strengthener by taking it only when there is a signal (from a DEXA scan) that you need it. Their bad side effects (like ONJ) increase with the duration of therapy, so there is a benefit in putting it off until you need it.
You can use this tool to see if you need it:
sheffield.ac.uk/FRAX/tool.a...
Great tool, thanks! How often take the DEXA scan? I heard it radiates the bones. What would be signal (from a DEXA scan) that I need it? I can ask my MO next week. Yes, there are many side effects and it can be dangerous to stop taking it once you're on it but the you have the ADT and bone mets working against you.
It's really just an X-ray - similar to a dental X-ray. There is no known advantage to starting them when you are mHSPC before you need them.
I will have the DEXA scan taken b4 my appt w/MO next week and based on the T score see what the MO says. I will also ask MO to give me the Zytiga because I am only on Firmagon and I know its given with other meds.
Here are my results from the tool (have no idea what it means): BMI: 17.5
The ten year probability of fracture (%)
without BMD
Major osteoporotic
5.4
Hip Fracture
1.2
TA
I have been on ADT for 1 year, and my useless MO didn't do a dexa scan at the start. Now I did a Dexa and it shows mild osteopenia T -1.8 . My Dr says no worries no action is needed. Is that correct? Would Prolia be a benefit?
Can you increase your bone mineral density with weight-bearing exercise and estrogen patches? Denosumab and Zoledronic acid have side effects that increase with use. Xgeva is for men with bone metastases, not Prolia.
Did not know that re: Prolia vs. Xgeva--thanks!
You can see Osteonecrosis with your eyes.On gums below teeth gum dies. Inside & out may be affected.
After my disease was dormant for a number of years my PSA started rising. My MO put me on Erleada. Lupron and X-Geva. This round, I have been on these meds 31 months. Earlier this year I started getting clicking in my jaw; I skipped the last X-Geva injection. Luckily, an x-ray did not show anything. Side effects from X-Geva are minimal for me. Due to other reasons I am always anemic. Once in a while I will get a very sharp pain in a joint, but that’s about all. My clicking jaw has gone away. Doctors would not prescribe it if the benefits did not outweigh the deficits.
I have been on xgeva for several years with no side effects. You always have the option to stop if you do have side effects.
It's dangerous to stop denosumab, as you get "rebound" bone loss that can lead to fractures. From what I've read the best thing to do if you want to stop is to first start on a bisphosphonate and then stop denosumab. Google can find lots of articles on this but here's one:
IMO...NoBody should agree to take prolia or Xdeva infusions UNLESS they have T score less than -2.0 on DEXA bone density scan. An even better method is to put your T score in FRAX calculator along with several questions they ask. That give you a composite score and that tells you what your true risk of fracture is. One should get DEXA and FRAX calculation every 6 months while on ADT.
Agree. I haven't taken the DEXA bone density scan but took the FRAX tool and it showed:The ten year probability of fracture (%)
without BMD
Major osteoporotic
5.4
Hip Fracture
1.2
The FRAX calculator need the T score of your DEXA scan. So get DEXA scan and put the value in FRAX calculator to assess your fracture risk.
Remember that the indications for these meds is not only to prevent pathologic fx. due to osteopenia/osteoporosis, but to prevent pathologic fracture due to the metastases themselves.
Insurance won't cover DEXA scan every 6 months.
Then Do what I do...I pay $60 to a private imaging center and they are glad to do DEXA for you.
My DEXA scan showed osteopenia. With my ADT and bone mets, Xgeva was prescribed. I have had no extra side effects.
The loss of bone density from ADT is associated not directly with low T, but with the low estrogen (E2) levels that result from low T. So one possibility is to add back some E2 with low-dose patches:
"In current clinical practice, the add-on regimen offers benefits. Ideally, before starting ADT all men would be well served by a pre-treatment DEXA scan. Those men with osteopenia (diminished bone density) or frank osteoporosis would be excellent candidates for add-on E2."
"Dosage guidelines for transdermal E2 in males have not been established, but a reasonable plan was suggested in the Gerber article: start with the low dose patch of 0.05 mg 2X/wk and increase to 0.10 if needed."
grandroundsinurology.com/pc...
You can also check out the Snuffy Myers video on this topic on youtube. The use of these patches does not seem to be widespread as a way to address estrogen-mediated ADT side effect, probably because they are associated with oral estrogen meds (which carry far greater health risks).
Very interesting article. I wonder if my MO would be willing to prescribe these E2 patches. Certainly seems better than not having anything at all when taking ADT and less side effects than Xgeva but is it enough to mitigate damage by bone mets and ADT?
Here's a link to that Snuffy Myers talk... he says some of his patients already experiencing bone loss even showed a reversal of that loss, and actually improved bone density while on ADT. He makes some good arguments that might help convince a dubious MO, too...
"Transdermal Estrogen + ADT For ProstateCancer"
What patches do you use? I heard they fall off easily and cause rashes.
I haven't started them yet, myself. Besides EdBar below, I believe a few others here use them.
Have been on xgeva since December 2020, no side effects and monthly blood work is good, family history of bone thinning and osteoporosis, it showed some deteriorating in the knees and wrists and arthritis in the shoulders. The xgeva has a side effect of helping the Mets in the bones so why not be proactive, I will get them monthly for a year then every 3 months after that. My part time job is standing for 5 hours and using my hands and wrists so this will, help in that respect.
Been on Xgeva for a year. No side effects. Bone density has improved.
Estradiol patches can help with bone health as well as hot flashes and other SE’s from ADT. I’ve been on ADT for over seven years now and my last bone density scan about a year ago showed excellent bone health. I’ve been using patches for about six years now, originally prescribed by Snuffy Myers.The only time I’ve used bone strengthening agents was to combine them with Celebrex as a form of treatment per Snuffy. That lasted about six months or so. Exercise and regular weight training also helps bone health as well as keep you toned. I do most exercises with 15-20lb dumbbells. It’s not only about treating the cancer, it’s about keeping your body in good physical shape to fight the fight through diet and exercise.
Ed
What dosage do you use for patches? 3 days or 7 days? Does your MO prescribe and is it covered by your insurance?
Estradiol 0.1mg, 1 patch twice a week. So I change the patch on Sunday and Wednesday. Yes insurance covers it and my MO writes the script.
Ed
If I were able to go back I would have started a bone health regimen of supplements as soon as I started ADT, including D3 - 6,000iu, magnesium-800mg, vitamin k2 complex including mk4 & mk7, potassium and boron 6mg. I was prescribed Xgeva when a bone scan showed I would have a high risk of bone fractures within 10 years if I didn't do treatment. The Xgeva along with my regimen did completely reverse the bone loss but I'm here wondering if I could have avoided the Xgeva altogether. Now trying to figure how to go off denosumab without causing my spine to have fractures.
That's why I'm afraid to go on it b/c once you start it is tricky to get off w/o risks. You can't go cold turkey.
With PC and bone Mets you would not be taking Xgeva / Prolia ONLY to treat osteopenia. You would take it for very real benefits of preventing “skeletal related events” including pathologic fractures, bone pain and also may reduce susceptibility to new bone mets. These benefits far outweigh the risk of ONJ if your dental care is in decent shape and you use good oral hygiene. In your situation I would want 6 months of Xgeva and then go to the Prolia every 6 months. Calcium and Vit D as indicated, especially in the early months when it will most actively be taken up into bones.
These are the front benefits. On the back side if you try to stop taking it you immediately lose those benefits you accumulated and are even higher risk of fractures.
They are both the generic drug called denosumab, just different brand names.
I got the adverst side effect, Osteonecrosis and my shoulder joints had pain from Xgeva. I had 8 months of shots, Now 6 months after stopping the dead jaw bone is still not healed. For me Xgeva was BAD.
I get a boner test every month........ I hate the test, it's a downer....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/15/2021 4:54 PM DST
My wife administers the boner test. It’s not so bad even if I flunk.
Now that's hillarious..... Thank you I needed that...........
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 04/16/2021 11:02 PM DST
Greetings B2F,
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THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/15/2021 5:13 PM DST
Had a wisdom tooth extracted I’m 71 stage 4 bone Mets. Took me three weeks to recover. Think that over xygeva is a very flawed drug, it’s like buying a computer with no memory!
Have you looked into Mega Dose Vitamin K2 from Life Extension Inc along with high dose Vitamin D3 >8000IU or Calcitriol active Vitamin D drug (not too much as it can raise calcium to dangerous level so I maintain a low calcium diet - (No cheese or dairy) Now 28 yrs with PCa off label treatment- PSA =.07
I have been on semi-annual Prolia shots for the last three years. It works. I went from osteopenia to normal. No side effects.
diagnosed 2014 stage 4 with bone extensive bone mets . My Urologist put me on Zoladex and Xgeva an injection once a month. After 2plus years my front teeth started falling out.My MO immediately took me off the stuff. It also resulted in me getting necrosis of the
jaw. My dental surgeon wanted to cut out my jaw and rebuild it with bones from my thighs. I passed on that. Too scary. So far my bones have been holding up well. As you can read from others ,Xgeva effects some worse than others. Try it. If it effects you ,you can stop it.
In hindsight would you take it again but for a shorter period? If not, what else would you take given todays meds.
Yes i would take it for a shorter period with probably a smaller dose. Without Xgeva I have gone back to Vit B2 and Calcium for my bones and foods that help with healthy bones. Alsoexercise daily, walking ,biking, golfing, lifting light weights.
I am 74 years old and my bones so far have stayed healthy.
good luck
I got the dead jaw bone. Osteonecrosis.
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