Prolia: I am 70, gleason 9, RP in April... - Advanced Prostate...

Advanced Prostate Cancer

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Prolia

snugrose profile image
17 Replies

I am 70, gleason 9, RP in April 2022. On ADT (Eligard and abirterone with predisone) since June 2022. Went for a second opinion this week with a medical oncologist who specializes in prostate cancer. He stressed the need for me to start on Prolia as soon as possible. My bone denisity was measured prior to the start of ADT and it was normal. My treating docs at Univ of Miami never mentioned any need for a drug such as prolia--just want me to take 1000 mg of calcuim with a vit D daily. Should I start on Prolia?

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snugrose profile image
snugrose
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17 Replies

I would at your age . I started this mess at 53 and the doc waited four years to prove I was in osteopenia until he put me on prolia . I did it four years and stopped it 8 months ago .My new mo just did a dexa scan and we will decide soon if to go back on it . After prolia four years I got a fractured non displaced rib . I’m thinking dammed if we do dammed if we don’t . Some say prolia causes fractures after time ,others swear by it . Weight bearing exercise is crucial in trying to keep bones strong . I’d follow your doc on this one . Good luck !

tango65 profile image
tango65

If the cancer is castration sensitive, still responding to ADT and zytiga and the bone density does not show osteoporosis T value < -2.5 in a dexa scan the treatment with prolia is not indicated even when the cancer has extended to the bones.

Tall_Allen profile image
Tall_Allen

If your DEXA scan was normal, why are you taking anything (including calcium or vitamin D)? Just have an annual Dexa scan and take what you need at the time you need it. Side effects accumulate over time. Weight-bearing exercise will help maintain your bone mineral density.

ctflatlander profile image
ctflatlander in reply toTall_Allen

Will Medicare pay for an annual dexa scan when on adt? Been off Xgeva for one year. Thankyou

cigafred profile image
cigafred in reply toctflatlander

I was told they pay for one every two years. May not be correct.

dhccpa profile image
dhccpa in reply tocigafred

That's my understanding, but perhaps that can be overridden with metastatic PCa.

Anyone know?

wagscure259 profile image
wagscure259 in reply toctflatlander

I have been told by my MO at MSK that Medicare will cover yearly when on ADT

in reply toctflatlander

Mine payed for bi-annual dexa scans . I’m thinking a dexa is around $600 ,the cheapest scan of all . Good luck getting them to foot the bill! 👍

Spring15-3 profile image
Spring15-3

there was no question about it for my husband. They started him on it immediately. I'm not sure why your docs didn't even bring it up?

Explorer08 profile image
Explorer08

my wife’s dentist said to stay way away from Prolia due to eventual jaw and teeth problems it causes. Her endocrinologist said exactly the same thing. Endocrinology folks started her on Tymlos instead.

carbide profile image
carbide

Putting metastasize cancer patients on xgiva/ prolia seems to be normal protocol. Hopefully this drug works for most(? %).I had adverse reaction, osteonucrosis in jaw bone ( only 3-4% get).

Best luck.

RyderLake2 profile image
RyderLake2

Hello,

I have been on a maintenance dose of Prolia aka Xgeva (denosumab) for nearly ten years. My wife is on this drug as well. One syringe of Prolia (60mg/ml) every six months. We heard all the dire warnings about osteonecrosis of the jaw and other side effects but in our case no problems. Because Prolia is a preventative drug the Cancer Agency will not cover this drug. However, my extended health benefit (EHB) plan picks up the cost for me and my wife's EHB plan picks up the cost for her. I would follow your oncologist's recommendation. Good luck!

efsculpt profile image
efsculpt

I was on Lupron, Zytiga, Prednizone for two years, had a Prolia shot every 6 months, Afterward a DEXA scan indicated normal bone density. I did not notice any other side effects.

Do get all dental work up to date before taking it and wait, I don't know how long (6 months?) after being off it past the 6 month interval before you get any dental work done.

Good luck,

Craig

j-o-h-n profile image
j-o-h-n

We have some great dentist in this group......Ask them....... Post again specifically aiming your post to dentist here. And they don't charge!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/26/2023 9:27 PM EST

Derf4223 profile image
Derf4223

Go ahead with Prolia but also be sure to take vitamin D3 (4000 IU/day if you live in a not so sunny area), vitamin K2 Mk-4, K2 Mk-7, Magnesium, Collagen peptides, and omega-3 fish oil.

Rev214 profile image
Rev214

I refused prolia , dead jaw is one side effect I cannot risk. My teeth aren't that great and have had dental work several times since beginning this cancer journey.

Once you start ProLia, you will need to stay on it for life. Read the Prolia information brochure...plenty other sideffects.

After studying it, talking with a qualified Dr. that was honest about the risk to benefit ratio, I refused it.

The longer you are on prolia, the higher the risk of jawbone necrosis(death) and possibly other nasty sideffects. If I had started when offered, I would have been on it 6 years now.

I have cracked ribs, but nothing else! Leg bones and Hips have been solid. I do walk between 3 and 6 miles, 4 to 5x/week. Weight-bearing to arms and legs help keep bones there strong.

Skippy3 profile image
Skippy3

Apologize for delayed response but it might be of interest. My primary PC doctor is Dr Sartor of Tulane University soon to be moving to Mayo Clinic in Rochester Minnesota. When initially diagnosed, Dr Sartor encouraged me to find a local MO as backup. I did and he immediately suggested I get on Xgeva, denosumab, 120 mg every month. Dr Sartor said it's not approved for HSPC and said I should not accept that treatment. My local MO said I need to find another doctor. I said no problem. Dr Sartor said if anything the local MO should recommend Prolia (denosumab), 60 mg every 6 months. After that conflict I asked Dr Sartor if I should be taking Prolia and he said not now. I proceeded to forget about it. Two years later I bring up the subject again and Dr Sartor suggests that I start taking 2 times a day, 500 mg Calcium plus 400 to 1000 iu D3. He also suggested a DEXA scan. It showed left hip T-score -2, osteopenia. I immediately launched into a full body weight lifting program, 2 or 3 days a week. I also bike 2 or 3 days of week which doesn't help the bone density problem. I see Dr Sartor in July and will ask him again about Prolia or not. Don't want to take it if I don't have to. Lack of bone density is a scary thing.

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