PSA down to .84, testosterone jumped a bit to 100 ct. I wrote before that because the undesirable side effects we, together with my Onco decided to stop Zytiga/Prednisone and just continue with Lupron injection every 4moths. On a previous post I said that I insisted on discontinuing Xgeva (afraid of the osteonecrosis of the jaw it can cause) injection once a month ( I actually only got the first injection) I got some negative feedback here for this. Well, I finally went to see a dentist, they made a lot of X-rays and after her evaluation of them (the dentist) she told me that the best thing I could have done is reject the Xgeva injections because my teeth are in a really bad shape, she believes it's a long radiation side effect (I got 38 radiation doses) that put me in the highest risk to develop osteonecrosis of the jaw!
So, I understand time is precious when it becomes fighting this monster disease, stopping almost all treatment is not the ideal solution, but I do believe that QOL is also very important. If/when I go back into a treatment plan, I will make sure whatever treatment plan includes the least side effects possible. Please take into account that I fight this battle alone, I am not lucky enough to have someone by my side to help, therefore my apprehension getting into anything that could require somebody's help. I am aware though, the day will come when I won't be able to do this on my own. I will deal with it then, and not a minute before until I can take care of myself.
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Blueribbon63
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Did you have a head and neck cancer for which you got radiation? Prostate radiation goes nowhere near your jaw.
You make the error of assuming that you will always feel as good as you do now. Your quality of life will deteriorate faster without the extra medicine. Your decisions will cause what you most fear to happen sooner.
Thank you for the advice, at this point the extensive damage my dentist says I have all over my teeth, regardless of the origin, makes me a candidate to develop osteonecrosis of the jaw. Bone density is unknown in my case. Perhaps I do not word my thoughts very clearly. I am not rejecting treatment per se, as of this moment am already dealing with undesirable side effects; weight gain , and fortunately the muscle cramps, spasms and feet twitching have diminished greatly as I am winding off Prednisone. I believe there are more treatment options, we need to find them with my oncologist.
If I understood correctly your cancer is hormone sensitive.
My understanding is that bone agents are used in hormone sensitive cancer only if a DEXA scan shows osteoporosis, regardless of the presence or absence of bone metastases .
Bone agents are used in mCRPC with bone metastases, regardless of the results of the DEXA scans.
Correct, I have never had a DEXA scan and so far my PC seems to be hormone sensitive. Onco assumed the aggressiveness of my bone Mets called for a triplet treatment plan that included Xgeva. I am definitely going to discuss this on my next Onco appointment. Thanks for the input.
There is not evidence bone agents reduce bone events in hormone sensitive patients without osteoporosis. My recollection is that clinical trials showed no benefit of bone agents in mCSPC.
Does your oncologist only treat prostate cancer? Perhaps a second opinion with someone who sub specializes, and only treats prostate cancer, and takes the time to explain everything very thoroughly, would be of great help to you.
Hello Blueribbon63 ! A dexa scan is easy and cheap to do . You should get one .So you know where you stand . I did two dexas . One every two years . I went in osteopenia after 4 yrs of adt and after 8 weeks imrt . No body ever told me that RT lad to the jaw thing . Thankfully it hasn’t in me so far ..I’ve had two ol gold crowns on molars go kaput . The bone collapsed around an attempted post . Now I have two gaps . I lost 25% bone density on my first scan , two years later another 15% loss . They put me on prolia . I gained 10% back on the next biannual dexa scan . I did prolia four years . I’m thinking I’m still deficient . I stopped the prolia and adt about ten months ago . I have a new mo ,my fourth one now . He said my density is now normal . After a recent scan . But he doesn’t have accesss to my priors scans .? I don’t know how I could of regained the other 30% lost prior? I read that the jaw issue is pretty darn rare . But I’ve seen a few men here with it and it’s sounds not too good . I started taking simple bone metzs after osteopenia was dxed ..I m still on them . Not too much calcium . So maybe the nutrients have helped the density improve ? I’m off prolia for now . I never had any bone metzs .My thinking with this is , dammed if we do , dammed if we don’t . I’m now 62 with 8 yrs no t . ,I did the orch in 2017 . No signs of pc for over seven years now . THe effects of it all are devastation on mind and body . We trade off for life itself . Best of luck finding your fix . Take care
You are young to get this horrible disease at such as advanced stage but with the right treatment you can have many quality years ahead of you still. Hormone therapy does have some unpleasant side effects but many tolerate them well and clinical trials have shown that staying on second line AR drugs such as Abiraterone or Enzalutamide in addition to the Lupron will likely extend progression free and overall survival significantly so rather than just stop Abi, I would urge you to try alternatives if the SEs were too unbearable - you will reap benefits in the long term for sure.
As others have said, seek out a specialist prostate cancer MO to get the best advice on all the available treatments while there is still time for them to be effective and you are young and fit enough to deal with the SEs. I wish you the best.
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For all of you taking Zometa, Prolia, Xgeva
xgeva
Xgeva with zytiga, orgovyx and prednisone 
BRONJ... what to expect?
