In November I posted my concerns that my psa increased from.01 to.27 after 15 months of Zytiga. Test today showed it at .67.
Unfortunately, ct scans also showed spread in lymph nodes. I am certainly mCRPC now which answers my question from my last post.
Also, I had a bladder tumor scraped via scope last May. It was PC and the genetic testing indicated aggressive variant PC. The tumor occurred while my psa remained at .01. I am being treated at Duke and they have the CHAMP trial. It's a mixed bag of 2 chemos and 2 immuno therapy drugs. I know HerbieP posted he took part in this trial. I am curious if there are other members here who have participated in this trial or similar nepc or aggressive variant trials or what else is available?
Thanks and my best to all of you.
T
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SimplyT
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Did they do a biopsy of the tissue scraped from the bladder? Duke (the Wang Lab) is a leader in IHC. Wake Forest has a AMG 757 trial against DLL3 is you're positive for that protein.
Yes, they biopsied the sample, which indicated aggressive variant PC. I’m uncertain about the DLL3 protein but will find out. I am thinking the CHAMP trial may be the way to go for me.
How is it possible to have a new bladder tumor occur while your PSA is 0.01? I never heard of that. Maybe at PSA=2. Are you implying it depends on Gleason Scrore and not on PSA? My Gleason is 9, whereas PSA is 0.17 due to ADT. Am I supposed to do a generic test or biopsy for my cell and blood to receive m I re accurate treatment? My bone scans etc did not show any speed of cancer yet. I went thru removal surgery, radiation, and ADT. I am in Bicalutamide + dutalutamide for 14 months so far.
I wish I knew, it may have been there all along but it existed and was removed while my psa remained at .01 and it was high grade prostate cancer. Some prostate cancers do not produce much psa.
Yes it happens. ADT and 9 bags of chemo dropped my PSA to 0.01 but did little to kill the tumours in my bladder. The tumours were bad enough to close off the left uterer and I almost lost a kidney. I had to have a stent from the kidney down the uterer and into the bladder - I peed blood for 10 months. Lucky for me the radiation sessions plus a bladder resection halted the demon. The tumours in the bladder were resistant to ADT and Docetaxel - they also did not express PSA. My Oncologist was surprised, my Urologist was not. Lucky for me, you live and learn, cheers DD 😎.
That sounds awful, cheers to your success! I had mine resected last May, we took a biopsy from the resection area in November and the beast is still there. Also, my recent ct scan shows it is enlarging. We may have to resect again. I’m hoping for success if I do this clinical trial but I have to admit that doing carboplatin and jetvana and 2 immunotherapies at the same time scares the hell out of me.
SumplyT, how are you doing with that chemo? Our thoughts are with you. We are headed to Duke tomorrow for first Docetaxel. Hope those side effects are minimal to none and that your results are excellent.
Thanks! Yes, all good so far. After 3 treatments and my psa is down. Thanks for your message. I hope all goes well for you tomorrow. Please keep me posted. My thoughts and prayers are with you.
Just telling you it is an aggressive type is insufficient. Ask for the full pathology report. Is it neuroendocrine PC? Is there sufficient tissue or IHC and genetic analysis?
Hey Mateo. My foundationone genetic report from the tumor scraped from my bladder states” Aggressive Variant Prostate Cancer(AVPC) molecularly characterized by harboring in at least 2 genes of TP53, RB1, and Pten as seen in this sample”
My MO tells me that my cancer does not meet the criteria to be NEPC and is more like an intermediate state with NEPC genetic alterations and metastatic disease that no longer responds to hormone therapy.
My ct scans this week showed 3 lymph nodes suspicious of metastatic disease in addition to an area still remaining in my bladder. It appears to be in soft tissues not bones. I am told that my cancer is behaving more like small cell cancer. Those are the only spots that we are aware of at this time, at least showing on ct and bone scans. Thanks for your reply.
This sounds like the disease state they are labeling “amphicrine” prostate cancer where the cells look like adenocarcinoma but have gained neuroendocrine genetics. I just finished a combination of docetaxel for the PCa component and carboplatin for the neuroendocrine component. PSA is down and will see what scans show in a few weeks.
Thanks for your reply, I wish you success with your treatments. How difficult was the regimen of the two chemos? I’m looking at a clinical trial that combines carboplatin and cabazataxil along with two immunotherapies.
I had 2/3 of the normal dose of each chemo, one infused right after the other. I mostly had big fatigue, but also lightheadedness that had a lot to do with the steroid doses. It takes longer to recover from each round. I'm about 9 days out now and walking a mile is still tiring.
That trial may be a good fit for you T. The cabazitaxel with carboplatin appears to be on target. Though I have no expertise in that arena. Perhaps a PSMA PET to see if it expresses PSMA? Though that may have been losses along with the PSA. Research carefully and get a top tier 2nd opinion consult. Very difficult situation. Sending support.
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