Starting PSA was 5,006.4

In November 2013 I was in a Northern California emergency room with severe lower back pain at age 65. Turned out I had previously undiagnosed, widespread metastatic prostate cancer. PSA was 5,006.4, with testosterone level of 908, and Alkaline Phosphatase around 424. Nuclear medicine bone scan lighted up like a Christmas tree. Extensive bone lesions and enlarged lymph nodes noted on CTs, from pelvis to neck. Biopsy of largest pelvic bed lymph node showed Gleason 4+4=8.

Fast-tracked straight to an oncologist and began systemic Androgen Deprivation Treatment with Lupron, supplemented with Zometa infusions for bones. PSA dropped to 2.4 within 3 months after testosterone fell to below 20. Pain went away. Alk Phos returned to around 50. PSA got as low as 1.0 and stayed below 2.0 for 15 more months. I have all the typical, but manageable, side effects of ADT, including hot flashes, libido changes, secondary sexual characteristics changes, some weight gain, etc. PSA then went up into the 4.0 range, and then was held down slightly as Casodex was added, then stopped, as no longer effective. In most recent months PSA rose from 5.9 to 11.2 to 18.1. Next step is likely to be Xtandi.

I attend several monthly local prostate cancer support groups, and find them quite helpful. My wife and I also participate in a weekly general, counseling-oriented, advanced cancer patients support group, and also find it quite helpful.

11 Replies

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  • I also had a very high PSA at diagnosis, 744, nowhere near as high as your own, but still extremely high. You can see my profile for my own story.

    Your treatments were spectacularly successful, and now you may be starting Xtandi, and you can read about my own experience with Xtandi on my profile.

    Perhaps you will have an equally successful response with Xtandi as you've had when you first started treatment. I had great success with Xtandi for 18 months, even though the side effects were brutal in my case. But it was worth it, it definitely extended my life, of that I'm convinced.

    The very best of luck to you,

    CERICWIN

  • Wow you sound like you went through a lot good luck

  • Ctarleton,

    So great that you shared your amazing story with us. I am very happy to hear how you have had such a good response to hormone therapy. Xtandi sounds like an excellent next drug, especially since you are so hormone sensitive. Ask the doc about changing Lupron for Firmagon to see if that might delay the Xtandi. The name of the game is to delay, delay and then delay when you can without letting the disease become a bigger factor in your life.

    Joel

  • Ctarleton,

    wow great story and great initial response to adt.

    welcome to the group

    Dan

  • That is an amazing story. I PSA of 5000 would have thrown me for a loop. Happy it is all working out for you.

  • amazing response to treatment ... keep it up

  • I agree with Joel's suggestion about changing from Lupron to Firmagon.     Over three years, I switched back and forth several times, but finally underwent a bilateral orchiectomy, as the Lupron and Firmagon didn't bring my testosterone level down to the therapeutic level of 20 or less.       While Firmagon and Lupron are very similar, I felt that the cancer cells wouldn't adapt as quickly to the ADT by switching.

    CERICWIN

  • I'm still baffled by the progression/aggressiveness of prostate cancer.  Started with a PSA of 2700, of course very high too, but an alk phos of >900 and only a one month nadir of 12.  Time to nadir of only 7 months.  Is cancer really more aggressive at a younger age (44)?

  • You can have a low PSA and still have an aggressive prostate cancer like me. Initial diagnosis was PSA of 20 and Gleason of 4+3. I was 44 yrs. old too. I had hormone therapy for 9 months then had my nerve sparing RPP and recovered well. Within 5 years it was back, had 33 external beam radiation treatments, success, then two years later it was back again like the animation 'And the cat came back, the very next day!' I had hormone therapy over the next 4 years, 1st intermittent, then permanent until it too was exhausted. Had to wait almost a year before I had anymore treatment. It took that long to get into a study, Enzalutimide then Abiraterone with Prednisone. I got about 6 months with the first and 2 months with the 2nd drug. Now on palliative chemo treatment with Doxetaxcel. Hard to believe almost 18 years have flown by. Grateful for each day, for the love and passion of my family and close friends and people working to keep me comfortable and alive. Keep your spirit up, watch comedies, kiss, flirt and get anger out so you don't waste precious time. Love you all! Pete~

  • 18 years sounds like a blessing although I'm sure it hasn't been easy. I am just starting on my journey. Prostate was very palpable on the DRE but my PSA? Oddly low at 2.7, and it is an aggressive cancer Gleason 4+4 in one core; the rest were 3+4 and only on one side. Started with eligard. Radiation to begin in two months. I was discouraged from going the surgical route -- prior TURP complicated things so the urologist (actually 2) was out of his comfort zone. I am 66. You give me hope that time is on my side and that I can live a little.

  • wow. blowing me away.

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