We learned today that I am now castrate resistant, I have an appointment with the radiology oncologist tomorrow morning to get all of the pain will be starting Zytiga as soon as insurance approval goes through.
In June 2019 I learned I was already stage four metastasized to bone, advanced prostate cancer. Gleason 9 & 10’s. Started on Bicalumide, next came Lupron, completed 6 rounds of dox chemo. In February 2020 after chemo, I was deemed undetectable. PSA at .85. Proceeded to bone scans and MRI as I continued to have pain in my back. I was told today that I am now castrate resistant, PSA @ 39 and widespread Mets to the bones We’re meeting with radiological oncologist in the morning to develop a plan for radiation of the “hot spots” for pain relief. Will be starting Zytiga in addition to Lupron upon insurance approval. So, my questions are what can I expect? Is this as bad as we think? Doc says lots of treatments to try - but I sure didn’t expect to go from undetectable to widespread Mets. How do I prepare for this? Very interested to hear others experience. Thanks all!
I'm currently on Zytiga for almost 2 years and I have had no additional side effects. Hopefully it will work well for you.
My only concern would be the short time period for becoming castrate resistant. Because of that, I'd want to get a biospy and see if I could learn more and potentially help direct treatment, especially if Zytiga is not effective or only effective for a short time.
These are things you can discuss with your doctor.
in reply to
Yes, I agree regarding fast rise... very concerned- asked my doc if she was, or what would make her alarmed and she said “we don’t get alarmed, we adjust” I guess I don’t know what I would expect her to say - they are always forward thinking - so far
Metastases are sneaky buggers. They can hide in fluids and tissue reservoirs, slowly preparing the "soil" they can thrive in, and suddenly undergo a growth spurt. I think of them as fungus spores and mycelium that never really go away.
Your oncologist is so right that there are a large array of medicines now available to you:
Zytiga, Xtandi, Xofigo, Provenge, Jevtana, and more available for special cases (like Keytruda for MSI-hi/dMMR or carboplatin for NEPC), and still more being tried in clinical trials.
I've seen both uses of the term "castrate resistant". Some use it to mean only resistant to first line drugs like Lupron and Casodex, Some use it to mean resistant to any drugs that inhibit testosterone production or uptake including Zytiga and Xtandi.
I’ve been on Zytiga since 10/18 and have found it highly effective. Currently both my testosterone level and PSA are at undetectable levels. The fatigue and hot flashes are nothing new. I had those with my first two years of taking Lupron for first line ADT. Best wishes to you and try to relax, if you can. You sound stressed and that’s never good for your Cortisol levels. By the way, I never realized there was 2 usages of the word castrate resistant. I was told back in 2015 that Lupron might work for a couple years before I became “hormone refractory.” I reached that after two years, and started Radium 223 since I had bone Mets giving me pain. Being chemo- naive, my white blood cell count remained excellent during all 6 monthly treatments. No one else in my treatment group made it through all 6 treatments because their bodies were too depleted from prior chemo. I enjoyed the six months with no ADT side effects and my PSA only rose to 7.0 which came right down once my doc put me on Zytiga.
I know you're in pain but would you provide us more about yourself and your treatments. Age? Location? Treatment location(s)? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. Thank you!!! Hopefully your future treatments will relieve you of your pain....
Of course I don’t mind at all, I am 54 years old, wife & three kids. I’m located in Indiana just south of the state line of Illinois and I’m currently being treated by Dr. Alicia Morgan’s oncologist at Northwestern Hospital. At the same hospital my urologist is Dr. Kent. All my treatments of any kind are at NW. Thanks!
Thank you for your quick and detailed response. It may be a good idea to copy and paste your response on your home page for future reference by you and by members. You're a young whippersnapper and we are glad that you've come to this site. As you know Pca is a slow growing disease so you'll be around to see your three kids' weddings and your grandchildren. Makes sure you buy a tux where you can let out the pants cause you'll be gaining weight. I wonder if anyone here knows of your two doctors, Dr. Alicia Morgan and Dr. kent? If so, I do hope they contact you. Take care of yourself and don't forget to kiss the wife and beat the kids, or is it the other way around?👀
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Possible castrate resistance already?
PC no longer castrate resistant 
