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Thread: They call me "Mr Lo Ti"

  1. #1

    They call me "Mr Lo Ti"

    Just got my latest six month labs, 18 months after my final Lupron shot, and my testosterone is 14.8, up from 11.2 ... oh yeah! Gonna make whoopee tonite

    My T is rising more slowly than my PSA was prior to RP.

    Speaking of which... report says my PSA is "0.000" ... I definitely intend to question the Uro on Tuesday. Six months ago it was <0.008 ... so have they eliminated the lower detection limit? They say they run the PSA in their own lab using Beckman Coulter assay. While I am indeed happy with "all zeroes" I don't believe it, and it seems to me that someone fudged the actual number.

    Is it any wonder that I do not trust doctors?

    And so I wait. Next draw will be Jan 2020. Hard to believe all this started in 2012!
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  2. #2
    Congrats, RobLee! I suspect the lower limit of detection hasn't gone anywhere. Rather someone forgot to record a "zero" reading correctly as <LLD.

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    2013 TURP (90→30 g) path neg. then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015

  3. #3
    Congrats.

    How do you feel on that low of testosterone? I hope you haven't had too many problems.

    I suspect I'll fall to around 260 after I stop the clomid. I'm tapering and feel like crap generally

  4. #4
    Quote Originally Posted by IceStationZebra View Post
    How do you feel on that low of testosterone? I hope you haven't had too many problems.
    I've adapted to the SE's of hypogonadism, but it's no picnic. I have electric fans in every room, and carry an Asian style folding hand fan with me everywhere. Two years on venlafaxine has evened out the mood swings, and I've identified most depressive triggers. Brain fog... is what it is. No major financial blunders so far, and I just assume this will be my new normal. I remember feeling real spacey when I quit smoking 20+ years ago... it's sort of like that. No body hair... I can live with that. And I always have been more nerdy than jockish. Any sports type ball has always somehow been magnetically attracted directly toward my face.


    I suspect I'll fall to around 260 after I stop the clomid. I'm tapering and feel like crap generally
    As I understand it, 240-250 is the lower limit for a healthy male. At 260 I'd consider myself a satyr! Not familiar with Clomid (but I can read). Without seeing your sig I can't tell... have you been on ADT or perhaps just naturally low T? ... I lost a testicle about 20 years ago so I'm only firing on one cylinder anyway. But I did father two well adjusted male offspring before that.

    Sorry you're feeling so bad. Is there a reason you're subjecting yourself to this?

  5. #5
    Quote Originally Posted by RobLee View Post
    I've adapted to the SE's of hypogonadism, but it's no picnic. I have electric fans in every room, and carry an Asian style folding hand fan with me everywhere. Two years on venlafaxine has evened out the mood swings, and I've identified most depressive triggers. Brain fog... is what it is. No major financial blunders so far, and I just assume this will be my new normal. I remember feeling real spacey when I quit smoking 20+ years ago... it's sort of like that. No body hair... I can live with that. And I always have been more nerdy than jockish. Any sports type ball has always somehow been magnetically attracted directly toward my face.

    As I understand it, 240-250 is the lower limit for a healthy male. At 260 I'd consider myself a satyr! Not familiar with Clomid (but I can read). Without seeing your sig I can't tell... have you been on ADT or perhaps just naturally low T? ... I lost a testicle about 20 years ago so I'm only firing on one cylinder anyway. But I did father two well adjusted male offspring before that.

    Sorry you're feeling so bad. Is there a reason you're subjecting yourself to this?
    A very good reason and his handle is ANOTHER 😀 Actually it was my new doctor.

    The clomid was introduced as a more natural (and cheaper) version of testosterone supplementation. My last uro was okay given my G6 to restart supplements and I thought I'd try clomid instead of the gels. Clomid got me back to where I was according to the labs, but I don't feel the same.

    Now that I'm tapering, my worst symptoms are the lack physical endurance, brain fog as you mentoned and ed. The anxiety is pretty bad too......I nearly got in a fight at walmart this AM when a guy told me to get out of his way. In a very uncharacteristic move I told him what he could do and strongly suggested he keep moving. I had a foot on him and probably 100 lbs so he wisely shut up and kept going. Had he not, we would have ended up in a fight....and that is just not me. I just snapped, but he was being a turd. Normally I'd have just laughed it off and kept going.

    Low t sucks. I make my living with my mind in a very high pressure, high deliverable level company. Most days lately, I just can't get started because I'm overwhelmed by the magnitude of what's happening.

    Oh well. The new doc is not on board with continuing testosterone supplementation due to the cancer but is if we have the prostate out (once were sure that the cancer is gone). I'm nor 100% on restarting after RP, if that's where I land, but I will cross that bridge if it happens.

  6. #6
    Rob! You should write a song with the lyrics: "They often call me 'Low T.' But my real name is Mr Lee". Name your band: The Escalades!

    Congrats on your PSA! Keep in mind that 0.000 is < 0.008!

    Best wishes for all good news on Tuesday!

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = G7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left: PM + EPE. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  7. #7
    Thanks MF, it's all good. I was thinking Lo Ti like ancient Chinese sage.

    The physical, mental and emotional problems I can handle. My concern is that as long as the T is so low, the PSA is meaningless. I have no idea if the cancer is truly gone or just hiding. My Uro is confident that I am in full remission, because we hit it with everything and hit it hard. But I also know that most recurrences occur between 5-10 years. So I guess some fear persists.
    Late 2012: PSA 4, age 62 all DRE's 'normal'
    Early 2014: PSA 9.5, TRUS biopsy (false) negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2ea 15-40-100% G8(4+4)
    Aug'16: DVRP,
    "broad cut" 11 LN-,-SM, 53g 25% involved, multifocal EPE, PNI, B/L SVI, pT3b

    Jan'17: started Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17
    Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-July 2019: PSA's <0.008, T~12
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"

    Mrs: Dec 2016: Dx stage 4 NHL/DLBCL,
    Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+6X IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog

  8. #8
    Rob, whatever the reason, i'm glad to see that your PSA remains undetectable (whatever undetectable is at your lab).
    Have the Drs given you any reason why your T is not rising after such a long time? I know it can happen, but its unusual.
    Diagnosed at age 64 (in November, 2014), PSA 4.3
    Nov 2014 BX 3 of 12 cores positive original pathology G8. Johns Hopkins second opinion, G6
    Surgery with Dr Ash Tewari Jan 6, 2015
    Post surgical pathology, stage T2c, bilateral disease, upstaged to G7(3+4)
    5% of Prostate involved in Tumor. Organ confined, Margins, SV, lymph nodes (9) all negative, PNI positive
    PSA <.02 until (uh-oh), 2/17 .02. Then 5/17-.033, 8/17-.033, 11/17-.046, 4/18-.060, 6/18-.068, 7/18- .082, 8/18-. 078.
    Decipher score low risk, .37
    ADT/Firmagon started August 2018. SRT to start SEPT 2018. Finished SRT November 2018, Finished ADT Feb 2019
    T=7, PSA <.05

  9. #9
    My current uro says sometimes it takes 12-18 months for the testes to kick in after 18 months of ADT. But I also suspect that I may have suffered low-T for a couple of decades, since my right testicle was traumatized (long story) around 25 years ago. My Uro at the time never tested my testosterone, nor did my GP. I asked my uro about it and he just said I would still have plenty of testosterone after the partial orchiectomy. I do want to talk with my current uro about that this week. I'm sure I'll write about it if I learn anything.

  10. #10
    Hello there Rob: Congrats on the zero's, it has been a long road. hope u are doing well my friend. MM
    DOB:Feb 1958
    PSA: 9/15: 5.9
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. +9 of 12 cores. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: -CT scan/BS
    Clinical Staging: 10/28/15 T2c
    ( RALP) UC 12/29/15

    Final Pathology Report; Jan. 6 2016

    -15 lymph nodes
    G9 ( 4+5)
    +EPE
    +LVI
    +Right SV -Left SV and vasa deferentia,
    PI present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---2/14/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

 

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