Bone Density

I recall Gary's onc saying that denosamab caused lower jaw bone deterioration as an SE. He's always asking about jaw pain and not getting dental work done without his knowledge. Are you getting an injection to strengthen your bones? So many of these meds go by several names I can't keep them straight. Maybe that's a concern he has.
Beth

Hopefully, the doc is just being cautious.

and you won't have to those infusions. I hear complaints about those.

Keep us updated,
Andrew

Gunner34:

My MO told me that one of the side effects of long-term Lupron use is bone loss. She also ordered a bone density scan for me, presumably as a baseline. I don't believe that this scan would be effective in anyway in finding any mets/lesions/etc, so I would guess that your doc wants you to get one for the same reason my MO wanted me to have one.

Oh, and it took me about 10 minutes, and is completely painless.

Hope that helps.

Rich

FYI, I had a bone density scan when starting HT just for the reason that Allen stated. During the 18 months I was on it, I was taking Boniva once a month to help maintain bone density. Once I finished and my testosterone recovered (not that it really ever did) I had another bone density scan and it turned out I hadn't lost any.

Dear Gunner,

We are both in the same age range and I am also on Lupron shots. A few months ago, my oncologist had me take the bone density test that you are now wondering about. It was quick and easy, I will say. It took just a few minutes.

It showed that I was already verging on osteoporosis, which is the result of the Lupron shots. I take Vitamin D and calcium pills every day, but the oncologist recommended that I get a PROLIA shot to strengthen bones. It's a six-month shot, so it will be given twice a year. PROLIA is a shot given to prevent osteoporosis.

So --- just wanted you to know I was in your same shoes a few months ago, and the bone density test showed that I was in need of a shot of PROLIA to promote better bone density. Thought I'd let you know my story on this topic, since we are in the same age range.

Take care,
Cyclone

Thank you all! This is exactly the feedback I was hoping for. After 25 months of dealing with this, I have not had more than 30 days without a doctors appointment so I am getting more skeptical of scheduling new procedures. That's the grind with PC I guess. I know that I have had bone scans but I don't know if they were DEXA scans to measure bone density. Since many of these were early in my diagnosis, it's probably time to get one (or another).
I'm surprised that some of you had measurable bone loss when your diagnosis has only been in the last year or two. Especially given that our age category is still on the younger side. This really highlights the strength and damage that some of these drugs are capable of - a necessary evil.
It's also good to see that some of you don't have any noticeable effect yet.
I didn't mind getting poked for labs or the Zometa infusions when I first started receiving them (once I got over the apprehension of sitting next to people getting chemo who must have been much sicker than I was). Then I did my tour with chemo. After that, even the little butterfly needle pokes are painful. I am still waiting for my veins to recover, which would make future infusions more tolerable.

Celebrate - maybe I'll try the ice pack when I get scheduled for my next Zometa or Xgeva. Thanks for the idea. My veins used to be easy to access and nurses would say how easy it is to see them and get an IV started. But after just a couple rounds of chemo they needed heating pads to get them to come back to the surface before accessing them. Cold Mn winters don't help, I'm sure.
And to answer your question - I don't know. I haven't spent much time figuring out why I was diagnosed so young as so many other guys here also are. I do see us all as brothers though and whether young or not so young, we are in this together. I had been having pain in my hips for at least a couple years and when I went to see doctors, they were thinking labrum tear or hernia or anything other than prostate cancer. I wasn't even diagnosed with PC until after I had bone scans and Cystoscopy after I finally presented with blood in my urine. My wife and I were going crazy self diagnosing and I think it took about 10 days or more of various tests, scans, procedures before we knew for sure.

I mentioned this on another thread -- it feels like there is a wave of advanced, aggressive disease guys that are doing well or responding well to treatments. I hope that the nomograms will need to be rewritten to incorporate a more positive outlook for us and for those that will be diagnosed in the next few years. I don't know if the data backs up this thought but I'm gonna surf it out as long as I can, regardless.

You are right, Gunner. the nomograms will need to be rewritten to incorporate a more positive outlook for guys like you and Adjust and Ray the Steel Guy, et al.

I am skeptical of them anyway on the long term projections since the data they are using is pre-Xtandi, pre-Zytga, pre-Xofigo, pre-Provenge, etc. and also cocktail approach versus monotherapy is more in vogue.

I guess they are alright for comparative purposes and worst case.

Keep breaking those rules:}

LupronJim