I'm wondering how many of those who have bone mets, and are taking ADT have also taken or are taking bone strengthening meds such as Zolendronic Acid (Zometa) or Denosumab (Xgeva). I've taken one infusion of Zolendronic Acid so far, but will discuss continuing it with my doctor next week. On ADT, we are losing BMD so our risk of fractures and SREs is going up every year we are on it. Would like to get others experiences and opinions on this.
I also just read an article on the subject regarding less frequent use of Zoledronic Acid still being as effective. The link is below.
When they measured my bone density it came back as “low bone mass per World Health Organization “. They only told me to take calcium pills and vitamin D.
Greg, My oncologist says constantly "you must take vitamin D. well, I have tried just ab't all dosages..last one just 400 and got terrible stomach problems. I have heard this from others, but if you can tolerate it..by all means take it.
Gregg I did zometa (zolodronic acid) for the first 6 or 7 years, Dr Sartor put me on every 3 month instead of monthly to avoid side effects, For the past 2 years I have been on xgeva which is supposed to be better, It is just a shot and not the infusion zometa was. When I did zometa I also requested it be infused over 45 minutes instead of 15 minutes , from what I read this would lower the chance of side effects , One which they called an acute phase response.
Thanks for the info Dan. I think the one Zometa infusion I had so far was done over 45 minutes, but if I do more I will definitely insist on that. I don't mind sitting in the chair a little extra time.
My xgeva shot takes maybe 10 seconds! No side effects.
Bob
Gregg, I get a dexa scan twice a year, once at the VA and once at the University of Michigan cancer center. As Dr_Who stated They put me on 500 MG of calcium and 2000 MG of vitamin D daily. This has been going on for three years, so far so good as far as my dexa scan results go. I don't take Zometa or Xgeva, yet. Hope this helps. Oh, your VA pcp will schedule a dexa scan for you.
Of course what do I know?
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Thanks for sharing your experience. I also have the VA for my healthcare and will be meeting wth my VA doc on Monday. I will bring this up with him for sure. I support the idea of doing the scans first to see if you need it, then getting it as needed. That sounds like a good approach.
So you are getting a DEXA Scan also know as Dual X-ray Absorptiometry? Just want to make sure for when I talk to him.
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Gregg57, correct, DEXA Scan also know as Dual X-ray Absorptiometry. At both locations. Somehow, some way the Ann Arbor VA and University of Michigan cancer center seems to have the same equipment. Also, all the doctors at the Ann Arbor VA are University of Michigan trained doctors including the oncologists. Gives me a warm and fuzzy feeling. I forgot to mention that my VA PCP prescribes me my calcium and vitamin D. (no Cost).
Doing fine. Have been stable over 12 months on zitega. Always looking forward for best next step. Hope you both are doing well. Have a wonderful holiday. Looking forward to some travel in the new year. Traveling to new places and exploring makes me feel healthy!
That is great noirhole!!! I'm so happy for you and so thankful you're ding well. We are good. Traveling and exploring makes me feel alive too ☺☺☺Haven't been able to do that in a while.
So much enjoy this Holiday season too and New Year to come.
I have been taking Xgeva shots since I started ADT. I was taking shots quarterly via my local oncologist, but my doctor at MD Anderson advised me to move this to every 6-months. She said there was not enough data on long term impacts and since my bone density was good, reducing was preferable.
I'm getting a Zometa infusion once every 3 months. Takes about 15 minutes. I take a daily Calcium (600mg) + Vitamin D supplement. My oncologist is somewhat indifferent to the efficacy of supplements ("take it if you want to") so the latter is my initiative. I have no way of measuring the benefit and just feel it's a good thing to do.
Gregg, you and I have compared data since our journey and it had been almost the same. I only take xgeva every 6 weeks. I also take calcium plus vitamin D twice a day. I asked my Onc if that was ok and he said yes then I asked him if there are any benefits of taking calcium and didn't look so optimist about it. Taking calcium has not harm me in anyway so I will continue taking it.
My treatment is pretty much the same as the others who responded. Lupron and Xgeva quarterly since I was diagnosed a year and a half ago. I also take calcium with vitamin D twice a day. My doc switched me from monthly to quarterly Xgeva shots about 5 months ago. That's when I discovered that my joint and back pain was from Xgeva. It's been much less noticeable with the quarterly shots. I've never had a bone density test. Sounds like I should get one based on the other responses.
Calcium and D for long time. Started XGEVA 3 months ago. Had fracture of L3 six weeks ago then broke bone in ankle after fall Orthopedic says bone is soft. Expect to return to Chemo after ankle heals. Take XGEVA every other Chemo session.
Dr. Myers treated me for mCRPC and bone mets for four years, during which my rapid increase in bone mets stopped and all but two bone mets healed. Here is what he told me. (I was on Lupron and Zytiga during this time).
Xgeva will help reduce the expansion of bone mets, but will not allow existing bone mets to heaI. I had taken Xgeva for nine months before seeing Dr. Myers.
He used Zytiga/prednisone with estradiol (Alora, .1mg/day) to halt the increase in bone mets. Then added Xofigo which reduced the bone mets to two within a year.
All during this time I also used supplements (calcium, D, K in New Chapter bone strength) as well as estradiol to keep my bones strong. I have not had any bone pain or fractures.
Just an alternative to consider that has served me well. I was Gleason 8, PSA 126, T4M1N1 at Dx six years ago, and had radiation in 2012.
Also on zytiga and calcium and vitamin d. And Lupron every 4 months. Had to get a pill box like my mother used to have to keep track of all the pills I am on.
I have been on Lupron for over 9 years. My bone scans have all been normal. My oncologist decided early on to give me Zometa every 6 months to prevent SRE (Skeletal Related Events) partly because he treated so many women with breast cancer. My mets are in my lungs and so far no detectable bone mets. My oncologist retired and my new oncologist brings a fresh look(younger, more recently trained). He has not stopped the Zometa. I get side effects with every infusion but they have decreased some over the 9+ years. I always ask for a slower infusion time.
I took prolia when I was on ADT3 for 13 months while having pelvic lymph nodes treated with IMRT. Then after a bone met was discovered by axumin scan which I treated with sbrt, I’m now on xgeva and back on ADT3. I also take vitamin D3 and calcium. My bone density tests have always been ok . I’m getting another test shortly since my last was one year ago. My urologist says he may change my xgeva script to every three months from every month based on bone density test results. I also exercise regularly to strengthen bones and muscles.
I had a dexla scan 4 years ago when I was put on Trelstar (ADT). It showed osteopenia in some areas. I was put on Prolia every 6 months which I have kept up. (The Trelstar is a 6 month shot, also.) No side effects from the Prolia. In fact, my last 2 dexla scans showed no sign of any osteoporosis or osteopenia. I am pleased with the results, although as has been mentioned, it is not free.
Take the least amount of zometa or xgeva your oncologist will give you. I was taking xgeva every month to keep my bones strong. I developed Osteonecrosis-of-the-Jaw-ONJ in my lower jaw. Developing Osteonecrosis-of-the-Jaw-ONJ is a 100 to one chance taking the typical amount given for bone metastasis. The amounts usually given for osteoporosis or osteopenia are much less and have a 10000 to 1 or higher in developing ONJ.
YOU DON'T WANT ONJ.
Talk to your oncologist about dosing these types of drugs.
Thanks for that information Dennis. I just did some reading on the subject. Post menopausal women have a dose recommendation of 5mg annually as compared to 4mg given every 3-4 weeks for prostate cancer patients with bone metastases. Here's the article:
Since this article was written, a large clinical trial showed that every 12 weeks is just as effective as every 4 weeks. I'm planning to use Zometa or Xgeva, but only if I need it and definitely not more than absolutely necessary.
Elgie uses Xgeva. There is no data after so many years....I think it's 3 years. He is the data for the future He is getting injection every 3 months. Docs had told him his bones had a miraculous healing where his Mets were. He was supposed to be switching to every 6 months but they gave him the injection at his 3 month appointment. He was good with that. I hope this helps. Ooh I think he's been on out for 4 years.
I have been on ADT since Dec 2013. Not one of my doctors has given me a DEXA test. I asked my medonc about a bone strengthener but she was worried about ONJ, so declined my request.
Since scans revealed bone metastasis seven months ago I’ve been given monthly Xgeva injections, no side effects that I’ve noticed. I’ve also been taking 1200 mg of calcium and 1000 IU of vitamin D since this dance began.
In my second and third year of Eligard I had Xgeva (Denosumab) every 6 months for 4 doses. My bones are stronger now and I am starting year 7. I take Vitamin D3 2000 IU gel caps twice a day (CVS) and calcium 1000mg daily.
Have been on Xgeva with calcium & vit D for 5 years --no side effects. Also on Zytiga and Lupron for same period and 16 years since DX--all things working well with my MO......
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He is getting injection every 3 months. Docs had told him his bones had a miraculous healing where his Mets were. He was supposed to be switching to every 6 months but they gave him the injection at his 3 month appointment. He was good with that. I hope this helps. Ooh I think he's been on out for 4 years. 
Mosquitos and being on ADT
Pubic bone fractures in advanced mPC
What’s next? Hearing different approaches from different people. 
