I feel kinda funny about sharing as with the advanced staging of PCa there's so much bad news, I thought I would share some good...
Now being around one year ago which began the discovery of Stage IV progression, the finding of mets inadvertently during an attempted Appendectomy, subsequent second successful attempt at Appendectomy and Hemi Colectomy, which removed tumors from my Peritoneal, Appendix and a small part of my Colon, followed by systemic therapy of continual ADT and addition of 6 Docetaxel infusions that ended in June...
My blood work and MRI are all very positive! PSA undetectable (<0.05ng), Acid Phosphatase 0.5, Testosterone @5... Also, MRI fails to find any suspicious areas including those that were previously indicated, ie, had avidity near Bladder neck/Prostate bed... all gone!
So, I find myself in a weird place, that I have relief where there's been nothing but concern and anxiety. We all know too well that feeling and the associated anxiety of the "next" test, or the follow up to a treatment and waiting to see if it had an impact. I'm hopeful that my abdomen and flank pain, which I insisted be further explored by my team and resulted in my drop back to Urology with my oncologists, resulted in the diagnosis of suspected Appendicitis that actually discovered my mets. My PSADT was <3 months at the time, and the spread which was found didn't show much on my PSMA scan, this may just have been a stroke of luck found upon the initial attempt at the Appendectomy,.. I still have some flank discomfort and soreness as in the midst of all this or maybe also coincidence, a kidney stone that is stuck but being treated that has been a source of pain in the same area. Who knows what was causing that flank pain, but it may have been very fortunate in my situation. Cancer in the Peritoneal usually goes asymptomatic until very well developed and not treatable. For a PCa patient with secondary spread to the Peritoneal and or Appendix, there are so few cases, there is no ability to prognosticate or predict a path forward. Anyways...
Just a crazy and wild ride so far... I am a believer in hit it early and hit it hard!!! And although this is just the first follow up, I'm very happy that the results look good and my body seems to have responded well! I want to go party and shout at the top of my lungs... YEAH!!!!!! While fist pumping the air!
Just thought to share, appreciate everyone here and all the encouragement and support I've received.
Best Regards
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Cooolone
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Cheering for you! Your posts are always very helpful…
Wonderful! Thank you so much for sharing. I can't tell you how much it means to hear some good news from someone going through the stuff we are all encountering (or are soon to encounter).
I've done the Lithotripsy which relieved the pain, but unfortunately did not dismiss the stone. It made it smaller yes, but it's still there. Options were to repeat the Lithotripsy or try one of the other two options, which I think I will jump to door #3, and let them go through the kidney and fish it out surgically! I should have just went that path as 1st option, lol. I haven't been able to get back to normal physically, especially post chemo, and have been off "normal" for at least a year now. So I cannot wait to get rid of it for sure!
Yes, this was done when the mets were first found last year. There are some markers I've noted in earlier posts. BRCA and MSI as actionable markers, among others... We did discuss the possibility of using immunotherapy in the future. I discussed possibly using immunotherapy but not waiting until failure/future, but my MO feels that it would require at least (failure/progression) and another use of hormonal therapy before going there. I would imagine Zytiga or similar... I am always concerned about using up lines of therapy unnecessarily of course. Especially if there is no clear evidence of benefit, but with my unique diagnosis, want to keep views outside the box as well.
Interestingly, he discussed that although they did identify genetic mutations in the previous tests, they are now retesting the the tissue for the presence of the protein (MSI) as well. I'm not aware of the difference, maybe you could shed some light for me on this?
Again, thank you always for your encouragement and support!
They do a IHC staining looking for MSH2 and MSH6, which are biomarkers for microsatellite instability (MSI). If you have those markers, Keytruda will probably work very well on you. Because of the location, it is probably a good idea to stain for somatostatin receptors and a few others as well. The Wang Lab at Duke has a very comprehensive library of stains. My wish list would include: AR (androgen receptor), PSA, PSMA, MSH2, MSH6, PD-L1,chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP), DLL-3, CD56, Somatostatin (SST)
Praise Jesus! 🙏 you’ve been through hell. keep rockin cooolone!
Coolone, always appreciate good news. I re-read your bio, and you say nothing about prostetechtoomy or radiation of prostate. You mention appendix and Peritoneal. ADT + Docetaxel appears to be what has taken you to this good place in time. Is there more to the story? Always appreciate your intellect and writing style. Thanks,
It certainly wasn't your time. When you are done celebrating --relax with a nice coffee when watching the sun rise and a glass of wine watching it set.
What would you do between those times? Spend time with family and friends? Enjoy the beauty of nature? Some spiritual thoughts? You can now do it all! I'm glad that weight is off your soul.
Thanks. It is so uplifting to hear that someone is having really positive results. I can only wish you the best of outcomes as things progress or better yet they never do.
Thanks again for sharing the good news. Sure is nice for a change.
My original dx was interesting. I had been feeling the best I had in years and was thinking how well I was doing! Helped my parents move from one care facility to other and ended up hurting my back (a common occurrences with me all my life). Started some PT and things got worse fast, which resulted in a general check up and MRI and CT scans. One of the results of all the testing had me seeing a Urologist. DRE prompted a biopsy, which came back Gleason scores of (5+4) 9 & (5+5) 10 in 11 of the 12 cores! The scans showed 4 lymph nodes enlarged right below my rib cage. So, I was actually lucky having the back issue that lead to the other testing!! Guess that was good news, LOL.
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