I have been quietly reading all of your posts and comments in the background since my dad's diagnosis with Stage IV adenocarcinoma (Gleason 9 (4+5)) with distal bone metastases in September 2022. My dad's PSA at diagnosis was 150. He is 64.
Since May 2023, dad has been on monthly Degarelix (Firmagon) injections and on a regime of 160 mg of Enzalutamide daily (Xtandi). His PSA reached a nadir of 0.02 in March 2024. Most recent PSA in April 2024 showed an PSA increase to 0.03 with testosterone value of 0.41 ng/ml. We have an appointment on Friday with his oncologist to discuss.
My dad (and the family) is quite frightened and apprehensive that this may mark the beginning of castration resistance. Can anybody please let me know whether this is reasonable fear given this increase and perhaps what options others have found that may help him perhaps prolong ADT? I've been reading on this forum about switching out ADT medication etc. and how that has given some people more time before castration resistance. I was wondering what options are available given dad's current situation. It would be great to know of these options before my dad's doctor appointment on Friday so that I can go prepared with some questions and research, and give my dad some comfort as he is very frightened.
Thank you all from the bottom of my heart, and please know that I think of all the men on here and their loved ones fighting this really gruelling disease.
Joy
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Agh-2022
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You and your family are typically -just another among innumerable- victims of quantitation (or otherwise dubbed rounding) error. From 0.02 to 0.03 the difference is anything BUT 0.01, in case these numbers were derived after rounding longer ones. The difference can be anything between the min of 0.025-0.024 = 0.001 to the max of 0.034-0.015= 0.019! I order to know for sure, you have two options:
a) Lab with 3 decimal places reporting (silly docs will tell you that this will cause you extra anxiety, which obviously you don't face now)
b) A series of (5-6) consecutive 2 decimal places tests. By oversampling the quantitation noise is attenuated.
Thank you so much for this maths… I am earnestly not that great with numbers and figuring out the calculation/margins of errors for this sort of test. I will absolutely keep this in mind as we continue to monitor his PSA ❤️
I completely get your anxiety. The one thing I have learnt here more than anything is that advanced prostate cancer is different for everyone. So with that caveat, please see my profile. I'm also on Enzalutamide. My profile shows my PSA bouncing around slightly from a Nadir but then settling down and so far 🙏 staying down. Hopefully your father has a similar trajectory. Well done for supporting your father.
Thank you so much for this kind and thoughtful response! My anxiety is definitely alleviated, I’m so pleased that Xtandi has been working so well for you… I hope it continues working for a long, long, looooong time! I read your reply and your profile to my dad, and he was deeply comforted ❤️
No need to worry yet. It’s a very good thing that you are staying vigilant. Keep reading the post and continue to learn. Use the search engine and you will find many past posts just like yours that will answer your questions.
I read your Bio I am not sure that your father did docetaxel or not.
1)
Wait and watch.. as KocoPr mentions and
2)
try to see if Provenge can work for him but nothing do with Xtandi
3)
I am NOT a doctor. Please talk to a doctor. There are many studies showing Xtandi starts working after docetaxel, even a 20 mg min dosage that something just keeps on the list
4)
third generations medicine is in trial so these may be good options and it should also be available by next year arvinas.com/
5) if bones mets are less than 5 , try to for SBRT radiations treatment as well.
Hello, try not to worry, easier said than done. Your Dad's PSA results are amazing, he remains undetectable, which is all we crave for. You may even find on his next PSA the results will be where they were before. Its infinitesimal that amount of difference.
I am on a very similar path to your Dad and I shall see what my PSA is later this month.
Welcome aboard and grab an oar. There's not much I can add as far as medical advice is concerned. However I can tell you that I too was 64 when my Urologist called me and told me the bad news (not that I was pregnant but that those tiny little bastards are eating me alive). That was 23 years ago and I'm still being a pain in the ass to every one I know (they're slowly dwindling, not my fault, I think). So If I can hang in there, so can your dear Dad.
I admire you for being such a caring and wonderful offspring to your Dad. So chill with us for information and camaraderie. If by any chance you are bored and have time on your hands get a tat that reads "I 💗 j-o-h-n".....(best if it's on your left hand)......
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