I've been on Lupron and Apalutamide for one year. Last night my MO informed that despite undetectable PSA there are new hot spots on sacrum, lymph nodes, rib, etc. I live in Boston area and get care at Dana Farber. Proposed care plan is docetaxel and carboplatin. Two questions if friends can help at all:
1. With this rapid and radical change in my status and care plan it seems that a second opinion could be advisable. Do you agree? If so, any recommendations?
2. Have others been down this road? Any advice for this guy who thought he had adjusted to the new reality and now evidently has taken another blow?
THANK YOU, THANK YOU
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PeakClimber
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I doubt you'll do much better than DF. They have "tumor boards" so that even doctors there that you have no interaction with review your case and suggest options. You might ask your MO to biopsy one of those new metastases for a pathological analysis and (if there is enough tissue) a genomic analysis. MD Anderson doing a trial of Jevtana+carboplatin followed by a PARP inhibitor. You can talk to your MO about replicating that per protocol since all of those drugs are now FDA approved.
Thanks TA, one year ago on diagnosis I decided on DF and have appreciated their care (although not the outcomes). Now I'm wrestling with whether a treatment opinion from outside might have any incremental value. I'd expect to continue at DF.
I did have a biopsy which is the source of the undifferentiated pathology report. Samples were also processed against the DF molecular panel, they call the ONCA Panel.
Undifferentiated is difficult because it doesn't respond to most therapies. I know that Michael Scweizer at SCCA is running a clinical trial of "double negative" prostate cancer; i.e., where biopsy shows low expression of both AR and neuroendocrine markers. You may want to contact him directly:
PC: you may check out the posts from board member tom67inMA, who's developed NEPC and is going through chemo I believe. He's writing a blog with a lot of information about his journey....
I don't know FDG? I had bone scans and CT scans and a biopsy of the growth in the fifth rib between spine and arm pit, I've described the location as behind my right shoulder blade.
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