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.

17 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.

  • Update from Charles: April 2017

    My PSA continued to climb from 18.1 to around 95.0 over ten or eleven months as I became "castrate resistant", and I did some consultations with other doctors. Eventually, in Oct 2016 I did 2 out of 3 Provenge treatments. Finally, in Dec 2016, about 3 years after original diagnosis, I added Xtandi (enzalutamide). Within 4 months my PSA has dropped from 94.8 to 5.0. No severe side effects, just the usual hot flashes, and lower general energy levels, just this side of fatigue, at 3 years and 5 months since original diagnosis and continuous ADT on Lupron. Age 68 yrs 9 mos.

  • Update from Charles: End of April 2017

    PSA on Xtandi is now down to 3.4.

  • Hi Ctarleton, Ive posted on this site. Do you think the Provenge Helped- Why did you do only 3. My father 84 has prostrate cancer and otherwise in good health and mobile. Now is becoming resistant to the Lupron( Eligard) and is being recommended Enzalutamide. PSA was 49 down to almost 0 a year back april 2016 and now back to PSA of around 9. Need to start the provenge and enzalutamide hence am asking you experience.

    Tks

    Dev

  • I had personal reactions to the leukapheresis process, itself, involved in the 3 hour process of removing my own blood cells of a particular type before they were shipped off to Southern California for their "activation" to become a Provenge treatment that is reinfused a few days later at the prescribing infusion site. Each treatment is 2 weeks apart. The blood removal/separation process typically happens at a prearranged location like a large city Red Cross blood donation site. A large bore needle is in one arm, and a return needle is in the other arm. The targeted cells are removed by a type of centrifuge machine. To keep the machine separation process flowing smoothly a type of anticoagulant is added by the machine, typically a citrate compound. When this compound comes back into the body it can chelate serum calcium, and, sometimes, cause side effects. I experienced sensations in my lips and face, a false sensation that the couch was vibrating when it was not, and after a while, a feeling of buzzing all over. On the second session I also had a major hot flash and almost passed out at the 1 hour mark. I have heard of a low percentage of men, some older, who have progressed to having leg and arm cramps during the procedure. But many other men have no adverse reactions at all. Both my reinfusions went well. About 36 hours after my first reinfusion I felt a lot of fatigue and weakness for 2-3 days. Not so much after the second. I assume it "took" and may be still be working, for whatever that's worth. It is probably best if taken very early on, giving it more time to work, if it is going to, and working on a lower disease burden. PSAs seldom change much as a result. I also got a blood clot in the removal arm that lasted about 5 days after the second cycle. The procedure is also Very expensive and requires a double-check of Insurance Formulary coverage, and any preapprovals. Many doctors are hesitant to recommend it, due to the high costs and results ambiguity issues for 3 cycles that are billed at over $90,000.

    I've started enzalutamide at age 68 and have had only some mild fatigue. At age 84, it might be easy to take the 4 capsules per day, but fatigue may be a more limiting issue. Again, this drug is also very expensive, on the order of magnitude of $ 9,000 per month in the U.S., and Insurance coverage(s) and preapproval planning is essential, and often involves using a specified Specialty Pharmacy. Some older U.S. patients can get help with copays to make their own costs $0. Some may go through a "donut hole" and incur initial costs in the $3,000 range, with copays on the order of $400/mo, thereafter. Some may be well covered with secondary plans and see copays of only $35/mo. (In other countries, such as Canada, the cost of enzalutamide can be only 1/3 as much as in the U.S.A. )

    Hope this helps, Dev.

    Charles

  • Charles,

    Thanks for the Fantastic informative reply. Its so valuable to get this info. My father is a US Citizen and can do the procedure in CITY of Hope or UCLA as we are Californian residents but reside in India for work. He has to take the trip to LA to do this and I have to weight the options out and if he can handle it and if it will make a difference. He has Medicare and Medicare supplement F from Aetna and Blue Cross. I got both in case one doesnt approve. Im not sure which one will cover it easily and also the Enzalutamide. Here is available at 3000/ mth for the Tables. I travel to and every 45 days So if its covered there I may as well try.

    Thanks

    Dev

  • City of Hope's staff will likely handle the complete package of appointments and insurance prior approvals for the Provenge cycles.

    If needed, see also:

    provenge.com/reimbursement

    Similarly, City of Hope staff will likely handle the prescription prior approvals and any Specialty Pharmacy details for Xtandi (enzalutamide). The prescription might either be filled directly from a City of Hope pharmacy, or a specified Specialty Pharmacy, as perhaps required by the secondary insurance drug formulary/coverage.

    You may want to build in a little "slack time" in any personal/travel scheduling, to account for possible delays for such administrivia. You could also try to preview the 2017 Formularies on-line, yourself, ahead of time, using the Insurance website(s).

    Finally, how are the patient's veins? In some of the clinical trials approx. 4-5% of subjects did not complete the initial process due to inability to access the veins for the 3-4 hours of flow during each leukapheresis process. In that event, it may or may not be deemed worth installing a PICC line to get around that relatively rare problem.

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