Hello everybody! This is Marcellus (55) from the Netherlands, so please forgive me if I make any grammatical mistakes. As a newbee I am also not sure if I have posted my message is in the right topicgroup....anyways....
In a short time I have learned that (almost) every man has his own PC story. Nevertheless maybe one of you recognizes my story...
I was diagnosed in April this year with advanced PC with high volume metastasis (only in the bones). Unfortunately an alleged hernia turned out to be a fatal disease. PSA 1380, ALP 566. Started with Zoladex in May which led to a spectacular decrease (660 in June, 260 begin July). After the first docetaxel treatment in July, my PSA level reached a level of 14.7, ALP 170. After the 5th treatment my PSA decreased to 4.4., ALP 160. Unfortunately last week (4 weeks after the 6th and last cure) my PSA increased 0,6 nmg to 5 again. The ALP also rose slightly to 171.
Although all other bloodvalues (LDH, HB ALAT) are in balance, I don’t have any pain, the bones are recovering and I am feeling physically very good, I am a bit concerned. Might this outcome suggest a prelude to mCRCP or could this be an expected fluctuating value?
I’d like to thank you all for sharing your stories and insights at this forum. You have given me, next to valuable information, hope and confidence!
Best regards,
Marcellus
Written by
mjv222
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You've had a really good PSA response so far and hopefully it will continue.
If it does start going back up again now, and you haven't already, I would have a biopsy to see if the characteristics of the cancer is what caused the time to castrate resistance to be shorter than normal.
You might also find a treatable mutation such as BRCA1 or BRCA 2. If your PSA continues to rise, you could go to a second-line anti-androgen like Xtandi or Zytiga and see if that works.
Generally speaking, short times to castrate resistance favor chemotherapy over anti-androgens. Hopefully that's not the case and your PSA continues to go down.
Tx Gregg! In January I ll have a consult discussing the many trials. We have a trial in NL which is called PROMPT, individualized treatment. Also about the gene mutations you reflected on! Will do!
I think PSA going from 4.4 ->5.0 is just part of normal fluctuations, ± 20% is common. Your stable ALP is a good sign too. You may want to ask for a separate bone ALP reading that isn't as affected by liver levels. But all in all, a good response. Now, I hope you can knock it back even further with Zytiga.
Tx Tall_Allen! It looks like on this forum Zytiga gains a better result then Xtandi. Both different medicine...have to sort that out. Will ask for the ALP reading!
Good response. Similar to my start of treatments in late 2018 and 2019. Zytiga has been very successful after chemo for me. Latest result 0.4 PSA and ALP 50. Next visit to my doc in January.
Tx Jost! Our stories sound familiair....you are a year a head of me and I hope you are feeling well! I am still in the emotional rollercoaster although I feel a bit better as the Prednisolon has left the building. My MO told me OS would be 12 months taking ADT and 17 months for the docetaxel....feels like a countdown. Did you experience the same? How did you manage that? If I may ask...what made that you were provided with abirateron instead of Enzalutamide? Have a jolly good day.....! Marcellus (I am not sure if everybody can see this message, I apologize if so....).
Welcome Marcellus ,to the club! What a great attitude you have . Good job finding this cite . It has been a tremendous help to me personally . No pain! That’s great also . Some men have been surviving with APC for decades... T-A and our others in the know shall advise you ... they can tell you much info . Recovery takes time . If you feel good ? Then start a muscle routine daily ... osteo and cardio issues advance on us rapidly with treatments . Good getting through the chemo . Stay strong 😎
So, as I understand your situation, right now, you are taking Zytiga+Eligard for 2 years as an adjuvant treatment to your salvage radiation. (It's not a STAMPEDE protocol, but it is a good one, imo). You are wondering IF you have a recurrence, what the treatment might be.
It depends on a lot of things:
• The treatment options available then will definitely be different from those available now.
• Will the metastases be detectable? If so, where? Are they still treatable and is there any advantage to such treatment?
• Will there be resistance to Zytiga?
• What is your germline profile and what will your somatic profile look like?
• Any tailored medicines for those?
• How rapidly is it multiplying - PSADT?
See why it's impossible to answer that hypothetical?
Lol, Marcellus, in my experience most people from the Netherlands speak better English than I do! Don't worry about it.....glad the group is helpful, some people on here really know their stuff.
Please tell us your bio. Age? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!
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Your English is on target, keep posting here for important info....
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