Denosumab, is it worth it

[spencoid2]

My MO put me on denosumab. but I have serious concerns about it. The side effects run from annoying to horrible (ONJ) I had both types of bone scans recently including bone density and I do not have osteopenia or osteoporosis. I do have about 6 bone mets including one that was responsible for a pathological fracture but this was a real fluke. The mets are in my ribs and in my sternum (the largest on that is growing) No pain except when I broke both sternum bones in a very minor confrontation with a shelf over a toilet. Fell about 18 inches forward into the shelf and cracked the bones. It would not have happened if the bones were not weakened but I do not plan to repeat this accident. I do have occasional accidents including one on my bike recently but I do not see how these sorts of accidents would break the bones where I have mets.

What exactly would denosumab do for me other than side effects and having to drive 8 hours to get the shot which costs $150 after insurance? The "billed" cost is over $11,000

[Tall_Allen]

If you are still hormone sensitive, definitely not.

[spencoid2 in reply to Tall_Allen]

not hormone sensitive. have had radiographic progression and rising PSA while on Abaterone and after orchiectomy. still have good bone density. should i put off the denosumab or is it good to start before bone density declines?

[Tall_Allen in reply to spencoid2]

Unless you are using a radiopharmaceutical, I think there is no reason for it unless BMD is low. I know a gym rat who avoided it because he kept his BMD elevated with exercise.

[dhccpa in reply to Tall_Allen]

Let me clarify, TA. So if bone density scan is normal, no need for denosumab even if metastatic to bones, IF hormone sensitive on any version of ADT (I've been on Lupron only since 11/2018, on denosumab since 1/2020).

Thanks very much.

[tango65]

If the cancer is hormone sensitive and you do not have osteoporosis (T value -2.5 or less), bone agents are not indicated.

[dhccpa in reply to tango65]

Even with bone metastasis, and on ADT?

[tango65 in reply to dhccpa]

Yes. There are not data that in castration sensitive cancer with bone mets, bone agents reduce skeletal events. Osteoporosis should be treated regardless of the presence of bone mets.

pubmed.ncbi.nlm.nih.gov/269...

[dhccpa in reply to tango65]

Thanks. Sounds like a talk with my MO is called for.

[London441]

Do you exercise?

[spencoid2 in reply to London441]

I walk a lot and bicycle but do not do regular weight bearing exercise, probably should. I am building a 9kw solar array and there is quite a lot of lifting of 79 kg panels. Oh the back When that is done will probably have to start using the Bowflex.

[RyderLake2]

Hello, I have been on Prolia aka Xgeva (denosumab) for nine years and three months to prevent any Skeletal Related Events (SREs). I was diagnosed with widespread metastatic prostate cancer in 2013. To tell the truth, I worried about side effects of denosumab at the time but I have experienced nothing of any concern. Not sure why you have to travel so far to either receive the injection or purchase it. A maintenance dose is only once every six months and any medical professional can give it to you. Keep refrigerated before being administered. Hope that helps!

[spencoid2 in reply to RyderLake2]

I am getting it once a month. My MO is a 4 hour (in the fast car) drive away. He said there is no problem getting it from my primary care doctor but there could be insurance issues? I wrote to her and hope to hear back soon. If it is an SQ or IM injection(which it is) I could do it myself. The MO also said various things about different schedules but was pretty vague about it.

[V10fanatic]

You might consider backing off to once every 3 months. Ask your MO. FWIW, I'm hormone sensitive and on Xgeva as per my MO Dr. Scholz at PCRI

[carbide]

Prostate Surgical removement in 2019,radiation, Zytiga, Eligard. Standard treatment is to add Xgeva (denosumab).

Xgeva almost killed me. I'm the 5% that had adverse reaction. Got Osteonecrosis of lower gums. My right shoulder was killing me with pain.

Osteonecrosis caused by Xgeva.

[ctflatlander in reply to carbide]

Sorry to see the effects of Xgeva. I've seen an oral surgeon and I can't get a reading on where my obj is headed. He did say the best thing to happen is if the bone would break off the gum tissue will heal around it. He hopes he doesn't have to pull the tooth. Is surgery an option for you? Thanks for any info you may provide.

[carbide in reply to ctflatlander]

My osteonecrosis is now healing.After 2 years of healing (photo).

I'm guessing this bone/scab will fall off.

Goes slow.

Healing osteonucrosis, 2 years from onset.

[spencoid2 in reply to carbide]

I am quitting Xgeva!

[carbide in reply to spencoid2]

Xgeva may be great for many.We are the 5% that developed adverse reactions.

We are allergic to the stuff.

Good news your body heals.

[ctflatlander]

I started Xgeva June 2019 with a bone density score of -2.2 and less. Got a shot every 3 months. I developed osteonecrosis of the lower jaw after my last shot in April 2022. My latest bone density scan in March 2022 was -1.3 and less. I never had gum or dental issues for years and my dentist said I had remarkable teeth and healthy gums. I've stopped Xgeva and now dealing with onj which is not fun. I don't know where that is going and hopefully, I won't need surgery and lose a tooth. The scary part is discontinuation of denosumab can cause multiple vertebral fractures. Although I'm currently work out at the gym twice a week doing resistance training and aerobic exercises, I wish I had started that when I was first diagnosed. My plan is to get another bone density test within a year of the last test and when I see my oncologist possibly go on a milder bone agent like Alendronate if I need it. The test will determine where I go from there. Good luck. Bob

[spencoid2 in reply to ctflatlander]

I am so sorry for your experience but thanks for reporting it. I am really thinking that since I have good bone density (need to find the report and see what is says) it seems nuts to be taking denosumab once a month. MO said something about less frequent shots but he was not clear and it seemed he was more concerned with my traveling not the side effects.

[Seasid in reply to spencoid2]

Take prolia every six months.

[spencoid2 in reply to Seasid]

i am taking it every 6 weeks, cut back from every three weeks

[Seasid in reply to spencoid2]

I believe Sartor recommends using Prolia every six months ones 60 mg.

I picked this information by reading posts here. I think you can use Prolia 10 years long.

[Skippy3 in reply to Seasid]

Dr Sartor is my Dr and he said no to Xgeva and not yet to Prolia when I first got on the train. Interestingly my X local MO recommended Xgeva even though it’s not FDA approved for hormone sensitive PC. It’s been about 2 years since I started. Will see Dr Sartor in January. I will ask him again about getting a dexa scan and Prolia. The two drugs are the same except that the dosage for Xgeva is much higher, 120 mg every month vs 60 mg every 6 months.

[Seasid in reply to Skippy3]

Thanks, good info. You could continue prolia for up to 10 years.

[Blueribbon63]

It is very 'interesting' to see how opinions suddenly change here. I have been scolded at this forum and at the MO for me rejecting to take Xgeva about a year ago! I am still hormone sensitive and have a lot of oral work to be done. My brother who is a general practitioner MD is who alerted me against it . I already deal with other health issues besides PC I just cannot afford (yes, financially too) to start on a drug that will further compromise my QOL. Metastases tumors are starting to show their ugly face, causing a lot of discomfort an pain. Opioids pain killers work but I don't want to depend on them. So I am in the middle of ten focalized radiation therapy. Palliative to help with the pain from three different positioned tumors; left back rib cage, right front rib cage (an the fist one to cause pain) and all around my neck pain full to the touch. to top it off I am battling COVID19 as we interact. Currently I only take an every four month Lupron Vaccine.

[spencoid2 in reply to Blueribbon63]

I am not sure what you mean by opinions changing and you being scolded for not taking xgeva. I do not know the details of what you said however long ago. Fortunately I have reasonable doctors with whom I can discuss the options. Still I am not really sure what they are recommending since no one is giving me the shots and I have asked several time whether it is important or not considering the side effects. So I am not taking it and my bone density is fine so why should I but I sort of remember that at least one doctor thought I should start again? This is so fucking confusing.

[Blueribbon63 in reply to spencoid2]

I'm this forum, I have always been told that I should take xgeba at any cost (not once any mention about the hormone sensitivity) because 'side effects are not a given and not everyone gets them' My MO has been more respectful of my decision. Even so, once in a while he brings it up and asks me if I am done with my dental procedures. So that he can get me started on it.

When I go to get the Lupron injection I have to be extra aware because more than once time the nurses had ready the Xgeba and Lupron infusions for me. I have asked them to take it off my chart permanently to no avail.

[spencoid2 in reply to Blueribbon63]

they sort of do the same with me but no one has arranged for me to get the shot. my opinion is that if your bone density is fine don't get xgeva. don't fis it if it ain't broke. my bone density is fine, just has a bone density scan but they still suggest, but not insist, that i should get xgeva. same old story, side effects are rare (but horrible) and yo uneed to protect your bones.