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  1. #11
    Regular User
    Join Date
    Jul 2017
    Location
    South GA
    Posts
    27
    Thanks, actually he didn't put me on Casodex. I hope that doesn't mess me up.
    06/16 TURP, Diagnosed Gleason 6, wait & watch
    02/17 Biopsy - Gleason 9
    05/3017 RALP, cancer in margin walls and seminal vesicles
    No cancer in 34 lymph nodes
    06/27/17 PSA 0.04
    06/29/17 started Lupron,
    07/21/17 Follow up w/Emory PSA 0.01
    08/29/17 Started Zytiga
    8/30/17 Follow up w/ Radiation and waiting to gain continence

  2. #12
    Top User RobLee's Avatar
    Join Date
    Jul 2016
    Location
    Florida Suncoast
    Posts
    715
    Red - Don't worry about the Casodex... my RO put me straight on Lupron without it. I was originally supposed to start radiation earlier this year but a lot of other stuff got in the way. Anyway, I have follow ups with RO week also and on Friday, same day as yours, I get my next Lupron shot already... plus my AUS is to be activated FINALLY (two surgeries involved in that, which also delayed everything).

    You are in good company here with Michiganman and a few others among us with similar pathologies, so please realize that this path you are on is well traveled. Sometimes it gets rocky and may seem to never end, so just keep the faith and know that we are with you.
    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct PSA 20 lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: 18 months Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 tx (70 Gy) RapidArc IMRT 8/14-10/9

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

  3. #13
    Regular User
    Join Date
    Jul 2017
    Location
    South GA
    Posts
    27
    Rob Lee, what caused your delay? What is the AUS? Do I have to be fully continent to start the radiation? I may be, but as of right now, I'm just learning to live w/ a pad.
    06/16 TURP, Diagnosed Gleason 6, wait & watch
    02/17 Biopsy - Gleason 9
    05/3017 RALP, cancer in margin walls and seminal vesicles
    No cancer in 34 lymph nodes
    06/27/17 PSA 0.04
    06/29/17 started Lupron,
    07/21/17 Follow up w/Emory PSA 0.01
    08/29/17 Started Zytiga
    8/30/17 Follow up w/ Radiation and waiting to gain continence

  4. #14
    Top User RobLee's Avatar
    Join Date
    Jul 2016
    Location
    Florida Suncoast
    Posts
    715
    Quote Originally Posted by redbelly7 View Post
    Rob Lee, what caused your delay? What is the AUS? Do I have to be fully continent to start the radiation? I may be, but as of right now, I'm just learning to live w/ a pad.
    Guess I'll start with the last question. I think some guys do go straight into radiation post-op but I'm guessing they must have had really bad pathology. Originally I was supposed to start radiation March 1st, and I was put into physical therapy ("Kegel coach") for incontinence in November. Then in December my wife was found to have stage 4 lymphoma. That started several months of me driving her to all-day chemo four days each month. SRT requires treatment every weekday for eight straight weeks. My RO started me on Lupron in early January to keep my PSA down until both her chemo and my PT ended. He said he had seen improvement in continence as late as ten months.

    One common requirement of the RT is that it does require a full bladder. The reason is to reduce the likelihood of bowel and bladder damage from the RT. Read some of the posts on SRT and most guys tell stories of being made to drink a bottle of water an hour before their daily treatment and if they "lose it" they get moved to the end of the line.

    In March my PT ended but I was not yet fully continent. My Uro referred me to a prosthetic surgeon for the AUS implant. AUS = artificial urinary sphincter. No one on this board has one as far as I know (repeated inquiries yielded zero replies). Anyway, I brought up the radiation and he said it's better to have it implanted before radiation rather than after. Radiation alters the tissues in the abdomen, which is why prostatectomy following primary radiation is rarely ever done. Also many guys have reported their continence worsened following SRT.

    So I tried to schedule as much as I could, including routine endoscopy and colonoscopy before I was due for RT. The AUS implant surgery is supposed to heal for six weeks before starting RT, but my surgery did not go well and required revision surgery which set everything back yet again. The only case I've read about someone having trouble with his AUS and required immediate revision was a guy who had it implanted after radiation. Mine still isn't right to my mind, but this has been delayed too long already.

    BTW because of the extent of my incontinence I gave up on pads early on and came to rely on external condom catheters and a leg bag. I have posted extensively with many tips in other forums for those who were interested. I never feel clean for very long when wearing a diaper and pads just don't hold enough, and after the third "leak" I said "enough".

    Most of this is chronicled in my blog, linked below in my sig. I also try to maintain a mirror on Blogger and Google+, though I've never tried to search for it... CancerCoupleBlog dot com, if you'd care for some light reading. It is non technical and is more about stuff we've been thru and not so much about treatments.
    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct PSA 20 lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: 18 months Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 tx (70 Gy) RapidArc IMRT 8/14-10/9

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

 

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