Starting Prolia injections.. but worried of side effects !!

[45yrsDenmark]

In 2.5 weeks, I am getting my 2nd shot of Eligard (6 months injection). During my last control (over phone due to Corona), my urologist said that I would also get a prolia injection along with the Eligard. Having read about it (densomab) - the side effects and not being able to quit when first started - I am getting quite worried if this is the right time for me to start with Prolia.

I was diagnosed Nov29th 2019 where I got the 1st Eligard 6 month injection and after 1 month added 1000mg of Zytiga/10mg pred. along with 2x400mg Calcium tablet (with D3 vitamin)... At diagnosis, I was gleason 4+3 in all 12 biopsies (adenocarcinoma) with PSA of 88 (now 0.71). Have bone mets 3 places in pelvic area and a slight shadow on 1 rib.. 4-5 lymph nodes. Had radiation during March 2020 (RapidArc) where I got 20x with 3Gy per fraction (60 in all) including the 3 bone mets in the pelvic area (which is NOT common to get here in Denmark - had to fight to get that). Except from huge urinating issues (lots of pain and no sleep for over a month at the last 2.5 weeks prior to finishing radiation and 2 weeks after where I was screaming and hyper ventilating and spent 1 hour every hour to finally get out few drops.. and doctors not able to put catheter since it was totally blocked) - I have really not had any pain at all.. just the standard side effects of the treatments such as no libido, no erection, hot flushes etc... So - cannot feel I have stage 4 PCa... but can for sure feel I am getting treatments !!!

So.. being only 45 years old, average fit etc... I would like some opinions on what you think of getting me started with preventive treatment of osteoporosis... have not had a dexa scan.. just standard blood samples once a month to follow PSA and liver numbers etc.. so it is apparently just because it is the standard protocol here in Denmark.. but.. (also having in mind that I am just 45 years) I don't feel comfortable to start up having the first prolia shot in 2.5 weeks.. only 6 months after I was diagnosed and no scans to support the need for it...

Also... IF I should start.. any reason that it should be Prolia and not Xgeva?

NB: I fought myself into getting a PSMA PET/CT scan 2.5 months after radiation (which is in 5 weeks from now) to see the current state and effect of radiation (to bone mets).. Also had one for diagnosis...

[Magnus1964]

You will probably be getting xgeva. It's the same thing as Prolia only a higher dose. I have been on xgeva for 3 years with no side effects.

[45yrsDenmark in reply to Magnus1964]

Did you get any scans prior to starting xgeva? Or did you just start on it right away?

[Magnus1964 in reply to 45yrsDenmark]

I was in a drug trial at the time so I was getting scans a few times a year.

[Hidden]

45? What? That’s a heavy duty price to pay at such a young age. I was 53 And felt that I was toast. I’m still here five years later . I will let the experts answer you. My urethra was blocked by PC tumors. That put me in Kidney failure . Resulting in bi-lateral neuphrostimy tubes and A Foley for a year and a half . That entire time told not to lift over ten lbs. Double adt and 8 wks imrt shrank the tumors allowing me to shed the tubes . During that time I lost muscle and bone rapidly. Now in osteopenia I started my first of four only prolia shots about 9 months ago . But I didn’t have bone Metz. I didn’t really want to do the shots either. NOr did I want adt or Rt . However Without all of this stuff I’d be long gone. Damned if we do, damed if we don’t ?

[45yrsDenmark in reply to Hidden]

Yeah, I still damn the day this happened to me !!!!

[Hidden in reply to 45yrsDenmark]

It is a train wreck. The younger you are the harder the fall from youth. Actually with me, I looked past symptoms for years before I went to a uro . A damed fool. I love Denmark. You should be able to live organic and get any alternative medicine there . Don’t dam yourself dam the disease . It’s no friend of ours. But we can live with it for many years. The point it to live with intent . To live life besides this damed pc . Our life’s are shortened by all standards . This should make each day not in brutal

Pain a blessing .. you can roll with the punches ... you are young enough to have a shot at decades of life . If you life happy and healthy with reasons to live.. I wish you well.. you will do what ever it takes to survive with pc . Peace to you young man🌵😎

[Magnus1964 in reply to Hidden]

I do look at my Pca as my wake up call. I was going through life on autopilot, half asleep. Several months after diagnosis I started living with purpose. Eyes wide open and more appreciative of this gift called life.

[Magnus1964 in reply to Hidden]

Wow dude, you have really been through a lot. God bless you.

[Hidden in reply to Magnus1964]

🙏

[Tall_Allen]

I do not think it is a good idea, unless you need it. It is easy enough to have a DEXA scan to see if you need it first. Also, don't supplement calcium and Vitamin D unless blood levels are low.

[45yrsDenmark in reply to Tall_Allen]

Thanks TA... Exactly how I thought about it myself.... I don't think I should just jump into this already now before the signs start to show.. I plan on hanging around here for many many years.. at least until my kids have moved from home (which is a lot of years giving my yongest just turned 5 a week ago).. so no need to put myself on this before it's really needed...

[Tall_Allen in reply to 45yrsDenmark]

I should add that I've known a couple of guys who worked out at the gym a lot and their bone mineral density was higher than normal even though they were on lifelong Lupron. Picking up your 5-year-old may be good for maintaining bone health.

[RyderLake2]

Hello,

I have been on a maintenance dose of Prolia (Denosumab) for seven years with no (touch wood) serious side effects. There is a small risk (about 2%) of osteonecrosis of the jaw. I would certainly tell your dentist and have all major dental work (Such as extraction) done prior to beginning Prolia. My oncologist considers Prolia to be a superior drug to Zometa (Zoledronic Acid). He has prescribed it to me along with twice a day Vitamin D and Calcium/ Magnesium to lessen the chance that I don't have any Skeletal Related Events (SREs) and to build bone strength. I was diagnosed with metastatic PCa in May, 2013 that had spread from my neck to my knees. Fortunately, Zoladex and Xtandi (enzalutamide) have kept my cancer under control. I get the Prolia injection once every six months. It is administered by my family doctor. Hope that helps!

[tallguy2]

If a bone scan reveals that you have osteopenia or osteoperosis then Prolia might be right for you. I have been getting the 6-month Prolia shots for the past two years with no obvious side effects.

[michael00]

I have had 3 prolia shots so far and 4th is coming up soon. Oncologist told me prolia over xgeva because it is a 6 month shot and xgeva is every 1 or 3 months. Basically it was convenience and use of medical resoutces, meaning his time. I have had no issues with the injections. Good luck.

[dadzone43]

Sounds like a "just in case" recommendation. Important to ask "why?" as you are doing. Just In Case medicine is both too prevalent and too dangerous.

[immunity1]

Good work for getting onto PSMA PET early in the journey. I have had 4 of them over 6 years or so. Probably a good idea to have a DEXA to get a bone density background and to aid in whether to use Prolia or not. I have been on ADT for 7 years and with all the usual side effect; but osteoporosis is not one of them. Excercise good for it (needn't be Mr World stuff).