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    Old 05-07-2020, 06:07 PM   #1
    Rugger6's Avatar
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    Rugger6 HB User
    Stopped ADT now what

    I have had Gleason 7-8 prostate cancer with PSA of 15. Cancer escaped prostate but barely. After 26 radiation sessions and 2 brachytherapy sessions, I went on ADT with Lipton and Zuniga. After 24 months of ADT and achieving a 0.07 PSA. The dr has now taken me off all ADT so I can regain some energy and strength. After two weeks, I am more exhausted and weaker than ever. Anyone else been down this road? Tell me what to expect and when , please.

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    Old 05-07-2020, 10:13 PM   #2
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    Eonore HB User
    Re: Stopped ADT now what

    Everyone is different, but two weeks is a drop in the bucket. The purpose of the hormone therapy is to drive your testosterone down to zero. The lack of testosterone is what is causing your symptoms. It takes time for the drugs to clear your system and more time for your body to resume production. My MO told me it can take up to two years. Your doctor should be monitoring your Psa and testosterone on a regular schedule, and hopefully you will see improvement in your energy levels over time. Some men recover very quickly, and some more slowly and a few not at all. In my case, I am ten months post ADT, and my last test in February was only 57, which is very low, but I feel a little better lately, so I would not be surprised if it has gone up since the test.
    Hang in there, it takes a while, but it should get better.

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    Old 05-08-2020, 04:44 AM   #3
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    Re: Stopped ADT now what

    Hi Rugger6 and welcome to the Board!

    I'll add to what has already been said, having been down this road four times myself, the last in support of radiation.

    Generally, recovery takes 3 to 6 months, as I understand it, which was my experience, though it can take longer, as mentioned. Age and the length of time on ADT make a difference. Apparently being around age 70 or older will generally mean a longer and slower recovery. Do you mind sharing your age and general physical condition/health before ADT and now?

    My own recovery was slower and weaker during the fourth course, which lasted 18 months. My testosterone will likely never fully recover (though it had during the previous three courses), probably because of the cumulative time I was on ADT (88 months), my age when stopping (age 70), and possibly because I am still taking Avodart (dutasteride) three days a week as part of my shield against recurrence. My last testosterone level in February was just 141, but that is high enough for me to feel fine and engage in a lot of physical activity; that level has been rising very slowly. In contrast, after 34 months of my first round of ADT starting in late 1999, when I was 56, my testosterone rose within a few months to more than 1,000.

    There are some tactics you can employ to build energy. Are you aware of them?


    - - - - - - - - - - - - - - - - - - - - - - - -
    Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low at <0.01; apparently cured.. Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

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    Old 05-23-2020, 05:11 AM   #4
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    Re: Stopped ADT now what

    Rubber6, Great to see you got a break on ADT, It will depend on your age if your an older adult you will never fully recover! If you were in your early fifties you have a chance to recover the Testosterone. Most of us start loosing testosterone in our late fifties never to come back. Its was explained to me if you exceed 24 months of ADT it will mostly likely never recover! I started at 58 and have never stopped, I'm 61 now. Escaped just a little? Cats out of the bag, its out of the bag! Great to see the PSA is staying low lets hope for a very long time. By all means don't be convinced to take a supplement to build testosterone PCa grows on Testosterone!
    steve d

    Diag. 56 DOB 2/59 PSA Base 1.5 01/14 2.0 6/15 2.4
    Biopsy 6/15 5 Gleason Score 8
    RP 10/15 Path 54g 5x4.2x2.8cm 4+3=7 Tumor location quadrants Bilateral
    Extra-capsular extensions present,SV no invasion
    Vascular invasion none, PNI ,Multicentricity multifocal
    Margins No tPresent inked margins 5 neg pT3a,N0
    PSA 10/16 <0.1 02/7/17 1st BCR 0.4 02/15/17 0.5
    Pet Scan 2/17 Neg PSA 03/17 0.6 Axumin trial 17.4mm tumor rt. SVB Casodex + Trelstar
    04/17 SRT (42) to include location of tumor
    08/17 PSA 0.1 Last 6 uPSA 0.006 uPSA 2/19 0.030 2nd BCR 5/19 0.235 5/30 0.32 6/19 0.34
    7/19 0.06 8/19 0.08 9/19 0.05610/190 0.08 11/19 0.07 12/19 0.07
    7/19 Trelstar, Xtandi, Zoledronic Acid
    12/19 (3) SBRT Iliac bone liasion post SBRT 1/ 20 0.06 2/20 0.04 3/20 0.02 4/20 <0.02 5/20 <.0.02

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    Old 05-28-2020, 12:21 PM   #5
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    Re: Stopped ADT now what

    Hi Rugger6,

    I would like to share my experience and viewpoint regarding the following comment:

    Originally Posted by Steve135 View Post
    Its was explained to me if you exceed 24 months of ADT it will mostly likely never recover!
    Steve - did a urologist tell you this? They are typically a lot less experienced in managing ADT than medical oncologists, and I suspect there may not be sound science behind what you were told.

    On the other hand, I haven't reviewed the research. My personal experience is sufficient to prove what is possible, but a lot of experience recorded from other patients is needed to indicate what is likely, what is average.

    I stated my own experience after a first round of ADT that included Lupron of 31 months (34 months was the following vacation - sorry for my earlier mistake: after stopping ADT (ceased pills, shot duration expiring) in late July 2002 after 31 months of ADT including Lupron, PSA at <0.01, testosterone at 19, age 59, my T rose to 43 within a month, 263 within two months, 524 by the third month plus a couple of weeks, and then reaching 785 at the upper end of normal by about the eight month point, and reaching a peak of 1,072 at the fourteen month point after stopping ADT (late September); it then "settled" down to high levels in the 800s and 700s (up and down) until I started my next round of ADT, with one result in the upper 600s in the months when I was on low-dose thalidomide to extend my vacation from ADT (another story). I experienced the benefits of a robust level of ADT during this vacation period.

    During my second round of 19 months of IADT3 (cumulative of 50 months for two rounds) my PSA again declined to <0.01 with a testosterone as low as 20, ending December 12, 2006. Within two months my T was 144, 417 by five months, and a high of 770, at the upper end of normal, by the eighth month (October), and varying down and up with a low of 490 and values in the 500s and 600s in ensuing months through September of 2008 (age 65) . Again, I experienced the benefits of a robust level of T.

    Toward the end of my third round of 19 months, my T level fell to just 5 (age 67). My T recovered to 200 by the fourth month (low normal) and reached a high of 666 (upper normal) by the sixteenth month (September 2011). I was again benefiting, but age and/or cumulative ADT were decreasing the benefits I experienced.

    After my fourth and final round of ADT, 18 months, in suppor of radiation this time, my T has not recovered to a robust level, but it has been slowly increasing over the past seven years and is now in the hundreds. I canl do moderately challenging physical work and have good endurance.

    I hope this helps.


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