Intro

Diagnosed one year ago, age 44, presenting symptoms of bleeding gums and hematuria (cancer invasion of bone marrow)..  Labs indicated pancytopenia and PSA of >2700.  Retroperineal lymph node biopsy showed adenocarcinoma pca, so no Gleason score.  "Too many to count" bone mets throughout skeleton on PET scan.  Started with and continue with Lupron.  Have tried taxotere (didn't work), Provenge and Xtandi.  On to Xofigo if PSA still not decreasing on Xtandi.  Minimal pain for past year and still very active.  PSA nadir of 12 in October, now 32.  Two very young kids at home.

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  • Praying for you Bud.

  • Having PCa at such an early age, you have my hopes and prayers that you will find success with treatment.      I've been on Xtandi for about nineteen months now, and it has helped to slow the progression.      I'm 67 and my beginning PSA was 744 three years ago, and now it's slowly risen from the nadir of 0.90 to 5.57.

    I even underwent a bilateral orchiectomy in November, 2015 as my testosterone level was above the therapeutic level of 20 or less.

    My bone mets aren't as extensive, just spine, sacrum and left femur, but "innumerable" pelvic lympy glands mets, similar to your own case.    I've had a lot of pain and more severe side effects than most, and now the prostate tumor has started up again, with excruciating pain, so am now on 20 radiation treatments to the prostate (it couldn't be removed because of bladder and rectum wall involvement).     I also had ten radiation treatments to the sacrum in 2014.

    There are new treatments, and I hope that you'll find just the right one---we all respond differently.

    CERICWIN

  • Hi Eric,

    Oddly, prostate appeared normal on PET and CT scans.  Guess is that cancer is aggressive (yes) and moved quickly from prostate to lymph nodes and bones.  Still no urinary issues.  The blood in urine came from the bone marrow invasion and low platelets.

    Sadly fascinating how each man's cancer is so different.

  • I wish there was something I could do to help you. I can tell you that I have been using CBD for pain daily. It helps me with the bone pain and pc pain. If you would like to look into CBD go to the Web site (www.hemplifetoday.com) it has relieved my kemo sickness too. I hope it relives your pain. Let me know if you try it and how it works for you. You can't over dose with this and there are no side effects that I have heard of in the last 2 plus years I have been using the CBD. No high in this as there almost no THC.

    Dennis

    DFZ4835

  • Cancersucks,

    What a terrible story.  Ask your doctor if you should have a genetic screen done to see if you have any DNA repair mutations or if have Brca mutations.  One of the PARP inhibitors (by a clinical trial)  could help a lot, there have been some really good results this past year (i.e. -  advancedprostatecancer.net/... ).

    Joel

  • So sorry you are having to go through this....

  • Sorry you are going through this. I sadly am similar to you, though I was only diagnosed one week ago (I am 49). Keep fighting and never, ever give up. Cheers.

  • My cancer is in a similar situation, at diagnosis, it had already taken over all of the pelvic lymph glands, and mets to spine and sacrum.       But I never had visible blood in the urine, even after the biopsy, which is fairly common.      My prostate was so large that the needles probably couldn't even go anywhere near the urethra.

    But it was scary that both ureters and bladder outlet were partially blocked, and I'm so lucky that my uro got me on the ADT in time to prevent complete blockage.

    But the prostate grew again, after having been shrunk by the ADT---causing me great pain.     My radonc called it about the size of an apple---so I underwent twenty radiation treatments to shrink the accursed thing back down.

    And now, with weakened immunity/resistance, I've come down with spreading infections, both bacterial and fungal, it appears.      My dermatologist isn't sure what's going on---it isn't anything typical---so I'm on some antibiotics, oral and topical and also a topical steroid.       Results from the biopsies and skin scrapings won't be in for two weeks.

    If it isn't one thing, it's another, with this infernal disease.    But I remain hopeful, and continue fighting.     

    Eric

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