A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 7 of 7

Thread: Still a Member of Zero Prostate Club

  1. #1
    Senior User
    Join Date
    Feb 2017
    Posts
    182

    Still a Member of Zero Prostate Club

    I've been absent from here for awhile. I try to at least stay read in on how everyone is doing, even if I don't post stuff.

    First the good news! I had my "every 90 day" PSA yesterday and it remains "undetectable."

    In addition to the PSA, my clinical trial mandates both bone and body scans every six months to see if there's any metastatic activity. Readings from both of these remained negative. (Obviously, MORE good news -- and these findings seem corroborative of the undetectable PSA.)

    I've now had 5 sets of these scans as well as 10 sets of PSA and Testosterone. JH has surely accumulated some comparative data from my enrollment and I hope all this is going to be a part of a larger chapter of treatment modalities.

    I had my final ADT injection last April. So far, my Testosterone has remained at "3". Standard range is 264-916 ng/dL. I have a long ways to go. Six months post last injection, my Testosterone is still at castrate level.

    I've also watched the impact of the ADT on my CBC, I've had a slightly depressed WBC, RBC, Hemoglobin, and HCT. In other words, I'm dealing with some anemia....which manifests itself primarily with a some irritating shortness of breath. My personal trainer changes up quite a number of exercises based on how I'm feeling, and how quickly I recover.

    I'm curious as to how anyone else has reacted to the longer term impact of ADT on their counts.

    Some months back I did a cardiologist consult, and he included a treadmill as part of the workup. Heart is fine.

    I've never been more than 5 lbs over my ideal body weight...UNTIL ADT. I'm dealing with about 15 pounds that I've got to get rid of. Believe it or not, that's my biggest gripe about the ADT. The hot flashes have been a PITA, but they are transitory.

    Given where I started this journey, I feel incredibly fortunate. And, I thank a bunch of you guys for your support!
    2010-PSA 3.59; 2011-PSA 3.58; 2012-PSA 5.28, 4.26; 2013-PSA 5.98, 7.37; 2014-PSA 5.90, 4.70; 2015-PSA 5.18, 7.35
    RALP 16 March 17, Wesley Long, Greensboro, NC
    Pathology: pT3a, pN1 Gleason 4+5=9 adenocarcinoma with + surgical margin at bladder neck; 3 of 16 lymph nodes positive; neg seminal vesicles, vasa deferens
    Referral to Dr. Ken Pienta, Clinical Dir Research, Brady Center, Johns Hopkins
    Enrolled in Clinical Trial IRB002120414 “Phase II Study of definitive therapy for oligometastatic prostate cancer post surgery"
    Completed: Docetaxel 12 Jun 17, 3 Jul 17, 24 Jul 17, 14 Aug 17, 15 Sep 17
    Lupron every 90 days for two years. Completed March 2019
    Bone/Body Scans - 15 Sep 17 - neg; 15 Mar 18 - neg; 14 Sep 18 - neg; 17 Mar 19 - neg
    EBRT: 69 Gy total (46 to fossa, 23 boost to suspect areas) 1st treatment 28 Sep 17, last 22 Nov 17
    PSA: 25 May 17=0.2; 5 Sep 17=0.1; 18 Dec 17=0.1; 6 Mar 18=0.1; 29 May 18=0.1; 5 Sep 18=0.1; 17 Dec 18=0.1; 12 Mar 19=0.1; 15 Jul=0.1; 29 Oct 19=0.1

  2. #2
    Thanks for the great update, BAB! You're a Triple Whammy kind of guy! With your attitude, any remaining PCa cells don't stand a chance!

    Keep it up! Don't leave home without your Zero Club Piority Boarding Pass!

    Djin
    Last edited by DjinTonic; 10-31-2019 at 02:08 AM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (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(5L, 11R): 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 retest)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  3. #3
    Quote Originally Posted by BAB View Post
    I've been absent from here for awhile. I try to at least stay read in on how everyone is doing, even if I don't post stuff.

    First the good news! I had my "every 90 day" PSA yesterday and it remains "undetectable."

    In addition to the PSA, my clinical trial mandates both bone and body scans every six months to see if there's any metastatic activity. Readings from both of these remained negative. (Obviously, MORE good news -- and these findings seem corroborative of the undetectable PSA.)

    I've now had 5 sets of these scans as well as 10 sets of PSA and Testosterone. JH has surely accumulated some comparative data from my enrollment and I hope all this is going to be a part of a larger chapter of treatment modalities.

    I had my final ADT injection last April. So far, my Testosterone has remained at "3". Standard range is 264-916 ng/dL. I have a long ways to go. Six months post last injection, my Testosterone is still at castrate level.

    I've also watched the impact of the ADT on my CBC, I've had a slightly depressed WBC, RBC, Hemoglobin, and HCT. In other words, I'm dealing with some anemia....which manifests itself primarily with a some irritating shortness of breath. My personal trainer changes up quite a number of exercises based on how I'm feeling, and how quickly I recover.

    I'm curious as to how anyone else has reacted to the longer term impact of ADT on their counts.

    Some months back I did a cardiologist consult, and he included a treadmill as part of the workup. Heart is fine.

    I've never been more than 5 lbs over my ideal body weight...UNTIL ADT. I'm dealing with about 15 pounds that I've got to get rid of. Believe it or not, that's my biggest gripe about the ADT. The hot flashes have been a PITA, but they are transitory.

    Given where I started this journey, I feel incredibly fortunate. And, I thank a bunch of you guys for your support!
    Got CBC results today as I have been fighting crap for 3 weeks. WBC is below range probably due to ADT.

    Congrats on the great report.
    Last edited by Duck2; 10-31-2019 at 08:24 PM.
    YOB 1957

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative.

    3/6/19. Pathology - Grade Group 4 Intraductal Carcinoma
    T3aNO, 1 mm EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.

    7 Nodes, SV, SM, PNI, and BNI were negative.

    LVI and Cribriform pattern present.

    Decipher .86 High Risk.

    Post Surgery PSA
    3/25/19 .03. (<1 month)
    4/25/19 <.03. (2 months)
    5/25/19 <.02. (3 months)
    9/10/2019. <.02. (6 months)
    11/27/2019. <.02. T<3. (9 months)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  4. #4
    Senior User
    Join Date
    Nov 2018
    Posts
    262
    Great update BAB. Keep them coming in the zero club.
    DOB 1955
    63 at dx
    3/2018 PSA 4.05 DRE normal refer to URO small town
    10/2018 PSA 6.28 DRE normal
    Bx 11/2018 12 cores 3 pos 1 - 5% left mid 2 - 50% left base
    GS 3+4=7 T1c
    Appt Mayo Clinic Phoenix Az 1/4/2019
    Dr. Paul Andrews recommend
    MRI 2/27/2019 Mayo AZ
    RALP 2/28/2019 Mayo AZ Dr. Paul Andrews
    Path: GS 3+4=7, Tertiary Gleason Pattern none, Grade Group 2
    Tumor presents moderate to extensive volume mainly posterior
    portion of prostate. Largest tumor nodule measures 8 mm
    Prostate: 21g 3.5 x 3 x 3 cm
    EPE: Neg
    Bladder Neck Invasion: Neg
    Seminal Vesicle Invasion: Pos (left seminal vesicle)
    Margins: Pos left lateral base & central base 2mm focus each
    Lymph Nodes involved: 0
    Lymph Nodes Ex: 16
    Nerves spared right side only
    Path Staging (AJCC 8th Edition)
    Primary Tumor pT3b
    Regional lymph nodes: pNO
    Distant Metastasis: Mx
    Continence 99% 9 wks
    ED Present
    PSA 4/17/2019 <.10
    PSA 5/2/2019 <.007
    PSA 6/10/2019 <.10
    PSA 8/1/2019 <.007
    PSA 9/16/2019 <.10

  5. #5
    Congrats BAB! Great update!

    Your exercise regimen will not only help counter the physical effects of ADT but also helps with your psychological status. Nearly everyone simply "feels good" following exercise! To address the "unwanted 15," try adding 3 sessions of aerobic activity to your schedule. You can mix it up each time by: Brisk walking outdoors or on a treadmill, stationary bike, elliptical machine, stairmaster, etc. Check with your trainer. You could do 20-30 minutes of aerobics following each training session.

    Based on reading the experiences of other FBs, it appears that the longer one is on ADT, the longer the time for testosterone to return to non-castrate levels. The Forum ADT experts will chime in.

    Celebrate your good news this Thanksgiving!

    Keep the Good Updates coming!

    MF
    Last edited by Michael F; 10-31-2019 at 09:32 PM.
    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 91 Months Post Op: Mean = 0.022 (22x uPSAs: Range 0.017 - 0.032) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  6. #6
    Experienced User
    Join Date
    Apr 2019
    Posts
    79
    Yes, slight anemia at the end of my six months of ADT. My numbers:

    RBC 4.12 M/uL (4.50 - 5.40 M/uL)
    HEMOGLOBIN 13.1 g/dL (13.6 - 16.5 g/dL)
    HEMATOCRIT 38.7 % (40.0 - 48.0 %)

    I think that the rate of testosterone recovery can also be impacted by the injection interval. One RO said that for a 6 month course, he would do it 3+1+1+1 so that recovery was faster. My MO did 3+3. No links to back this up -- will research if I have the time.

    I only managed to end ADT at the same weight by going absolutely crazy with exercise and very carefully watching my diet. Told everyone that it was just a delayed onset mid-life crisis that led me to the gym, running, rollerblading, bicycling and serious amounts of walking all to get in shape for a 5K. The 5K goal probably played a big part in my being compliant with my exercise program.
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT 4/19, ART completed 9/13/19
    PSA <0.1 on 1/19, 4/19, 7/19, 10/19

  7. #7
    BAB: In the world of PCa, great news like this is most welcome. Congrats..and thank u for for participating in the Clinical trial. Because of men like u, others may benefit. Not much help to u on your other questions, as all my counts except "t" levels are pretty much normal. My last 3 month shot was Feb. 2018....My T levels are just below the lowest end...around the same as what is indicated in my signature. Doctor says it can be a few years or maybe longer for that to return to normal, also said maybe not at all for some men. Who knows. Glad to see things going well for u, please keep us posted. Best regards, 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---8/22/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

 

Similar Threads

  1. Replies: 16
    Last Post: 03-20-2019, 09:26 PM
  2. Replies: 3
    Last Post: 05-31-2018, 06:13 PM
  3. Still in the Zero Club
    By Arthur Dent in forum Prostate Cancer Forum
    Replies: 6
    Last Post: 07-07-2015, 10:53 PM
  4. Dad still a member of the zero-club!
    By mom2two in forum Prostate Cancer Forum
    Replies: 1
    Last Post: 02-10-2015, 11:48 PM
  5. still a member of the zero club
    By Bravehardon in forum Prostate Cancer Forum
    Replies: 19
    Last Post: 10-07-2014, 02:54 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •