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    Old 11-02-2021, 06:52 AM   #1
    jonajona
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    My Current Status - Comments Welcome

    My PSA history:

    11/18/09 3.4 Before EBT radiation
    08/27/10 0.7 After EBT radiation
    03/17/11 0.4
    09/28/11 0.2
    04/04/12 0.2
    04/03/13 0.3
    06/10/13 0.2
    04/01/14 0.3
    04/02/15 0.4
    04/27/16 0.7
    07/06/16 0.569
    09/20/16 0.487
    01/09/17 0.733
    04/03/17 0.633
    07/24/17 0.683
    01/24/18 0.831
    09/04/18 0.803
    06/06/19 1.09
    05/04/20 1.4
    08/03/20 1.44
    12/21/20 1.73
    05/03/21 2.03
    09/20/21 2.09

    Original biopsy showed Gleason 6 from 10 % to 90% in almost all cores.

    I am 10+ years after EBRT and have experienced a steady slow climb since nadir of 0.2 in 2013. In the last 2 years my PSA rise has started to accelerate and I am nearing the BCR threshold post-radiation. My urologist noted my concern and I have had a bone scan (probably unnecessary because of my low PSA) and the new PSMA PET/CT with PyL--which is now the gold standard. The scan was negative for metastases. Still, I am concerned. My urologist has taken a watch and wait stance with 4-month checks on PSA (ultarasensitive). Does anyone else have a similar experience?

    Last edited by jonajona; 11-02-2021 at 07:58 AM.

     
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    Old 11-02-2021, 12:13 PM   #2
    Terry G
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    Re: My Current Status - Comments Welcome

    Jona…sorry to hear your numbers have increased. I hope your post results in some suggestions and help. Although my numbers have bounced around my overall trend has been good. I hope you continue to post and share your story as it may help others. Terry
    __________________
    Rising PSA:
    11/13 1.95; 9/15 3.28; 10/16 5.94
    TRUS 1/17
    Bx: Three of twelve cores adenocarcinoma Gleason 6 (3+3) all on left side, no pni.
    DOB 7/21/47; good health; age 69 @ Dx
    Treated 6/17 SBRT @ Cleveland Clinic by Dr. Tendulkar
    Reduced ejaculate only side effect; everything works
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    PSA’s post.SBRT 1.1, 1.1, .9, 1.8, 2.7, 1.0, 0.3, 0.6, 0.8, 0.4

     
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    Old 11-02-2021, 01:21 PM   #3
    jonajona
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    Re: My Current Status - Comments Welcome

    I had pretty extensive Gleason 6 all through my prostate bilaterally, so I was worried about the scan--which supposedly picks up even tiny metastases. If it was true Gleason 6, maybe it won't ever progress outside the prostate. If my PSA continues to rise, I am going to schedule a consultation at Johns Hopkins in Baltimore where I had my EBRT done. I will continue to post my journey.

     
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    Old 11-02-2021, 08:25 PM   #4
    Insanus
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    Re: My Current Status - Comments Welcome

    PMSA PET is one tracer used for Pca detection. It not the lone gold standard because not all men have PMSA positive prostate cancer. Try a different tracer.

     
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    Old 11-03-2021, 08:58 AM   #5
    jonajona
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    Re: My Current Status - Comments Welcome

    Insanus,

    And what tracer or tracers are you referring too?

     
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    Old 11-03-2021, 09:39 AM   #6
    jonajona
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    Re: My Current Status - Comments Welcome

    I did a little research and discovered that about 10% of PCa does not express PSMA. It appears an MRI might pick up lesions in this case according to one article I read. Thank you, Insanus, for your information. It gives me much to think about and possible next steps if my PSA continues to rise.

     
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    Old 11-05-2021, 08:32 AM   #7
    IADT3since2000
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    Re: My Current Status - Comments Welcome

    Hi jonajona, and welcome to the Board! You wrote:

    Quote:
    Originally Posted by jonajona View Post
    I did a little research and discovered that about 10% of PCa does not express PSMA. It appears an MRI might pick up lesions in this case according to one article I read. Thank you, Insanus, for your information. It gives me much to think about and possible next steps if my PSA continues to rise.
    I have heard that it is about 20%, but either you or I may have more recent information based on further research. Also, that greater sensitivity at missing just 10% may be for PYL versus the "older" agent ("older" meaning here very recent, approved within the last year) PSMA imaging agent - research is moving fast).

    On the good side, you obviously have a long PSA doubling time (PSADT), and it took about six years before there was any appreciable increasing trend in your PSA. I'm wondering if non-cancerous prostate cells were so affected by radiation that they took years to begin producing PSA, and then just a reduced amount. Have you talked to the docs about that?

    There are some mild interventions you could try. One is lifestyle - nutrition, quantity of food, and exercise, all of which play some role in combatting prostate cancer. On the medical side, the old diabetes drug metformin has been associated with better outcomes for prostate cancer patients. Research has been underway for some time to determine if that is a causal effect, as many suspect based on the known impact of metformin on "signaling pathways" that affect the cancer. Statin drugs, of course primarily used to control cholesterol, have also shown a desirable impact on prostate cancer. For some patients, aspirin has a good effect, but genetics play a role, as does the patient's ability to tolerate aspirin.

    At a slightly elevated level, the 5-alpha reductase inhibitor drugs - finasteride/Proscar ad dutasteride/Avodart - decrease DHT, a more potent fuel for the cancer than testosterone, and for the vast majority of patients (but not all!) have a negligible or mild side effect profile. However, their impact has never been thoroughly studied. Unfortunately, the great surgeon Patrick Walsh, at Hopkins, was against their use, and his influence has swayed many doctors, unreasonably in my fairly informed view. (Some of his colleagues at Hopkins sharply disagreed with him.) One or the other of these drugs have been part of my own therapy or guard against recurrence for more than twenty years now.

    My hunch is that you are still on a good course just as you are, but this bears watching. Please let us know how you do.

    Good luck!

    ….Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. 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, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 11-18-2021, 05:19 AM   #8
    Insanus
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    Re: My Current Status - Comments Welcome

    Quote:
    Originally Posted by jonajona View Post
    Insanus,

    And what tracer or tracers are you referring too?


    choline and fluciclovine (Axumin)

     
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    Old 11-18-2021, 07:46 AM   #9
    john4803
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    Re: My Current Status - Comments Welcome

    Quote:
    Originally Posted by Insanus View Post
    choline and fluciclovine (Axumin)
    I had the fluciclovine scan on 11/10/21 and with a 0.4 PSA, they found a spot on my spine, at T-11. So, in my mind, it can be pretty sensitive.

    I see my MO, on the 24th, and will see whether he wants to spot treat or go systemic. I probably prefer systemic, incase there are mets. that are not showing up.

    Best of luck!
    __________________
    DOB 4/7/48, Live just West of St. Louis, MO.
    Prostate - 70G, Pc 40%
    T3b, GS 9
    11/17 RALP
    Lupron every 6 mon., (11/17 - 5/20) 2-1/2 yrs.
    (2/18) IMRT/IGRT (45Gys), (3/18) (66Gys)
    PSA

     
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    Old 01-07-2022, 04:37 PM   #10
    john4803
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    Re: My Current Status - Comments Welcome

    Quote:
    Originally Posted by john4803 View Post
    I had the fluciclovine scan on 11/10/21 and with a 0.4 PSA, they found a spot on my spine, at T-11. So, in my mind, it can be pretty sensitive.

    I see my MO, on the 24th, and will see whether he wants to spot treat or go systemic. I probably prefer systemic, incase there are mets. that are not showing up.

    Best of luck!
    My RO determined that my cancer is Oligometastatic and suggested just treating the met now.

    I just finished (today) 5 doses from a CyberKnife treatment of a metastases on the T-11 Lamina, of my spine. Each dose was 500 cGY, for a total of 2500, over 2 weeks. Absolutely no side effects, so far! The hardest part was laying completely still for 50 minutes, at a time. I did not have any pain before discovery.

    Will wait 3 months, retest PSA (was 0.4) and have another, more advanced PSMA Scan and then go from there.
    __________________
    DOB 4/7/48, Live just West of St. Louis, MO.
    Prostate - 70G, Pc 40%
    T3b, GS 9
    11/17 RALP
    Lupron every 6 mon., (11/17 - 5/20) 2-1/2 yrs.
    (2/18) IMRT/IGRT (45Gys), (3/18) (66Gys)
    PSA

     
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