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Thread: If you had ART or SRT, when (if ever) did you start to see side effects?

  1. #1
    Senior User
    Join Date
    May 2017
    Posts
    205

    If you had ART or SRT, when (if ever) did you start to see side effects?

    I'd like to know at what point in your therapy did you start to see side effects? I know some people mentioned they had little to no side effects. I know everybody is different but was wondering what to expect. I'm about half way through my 39 sessions. I have some minor issues but not sure if they are caused by the treatment. Just wondering what other's experiences were.
    DOB 1961
    2010-05 2.42
    2015-07 7.0
    2015-08 5.4
    2016-02 6.2
    2016-09 7.86
    2017-02 7.2
    2017-05 5.65
    2017-06 biopsy 7 of 13 cores G6
    2017-10 7.11
    2018-04 7.47
    2018-11 11.80

    2019-01 Da Vinci RALP
    Pathology report:
    Final stage pT2C
    Histologic type: Acinar adenocarcinoma with focal mucinous features
    Grade: 3+4=7 35% pattern 4
    23% of prostate involved
    EPE-
    BNI-
    SVI-
    PNI+
    LVI+
    Margins focally positive [1-3 mm] 4 locations
    Cribriform pattern noted

    Roche ECLIA uPSA
    2019-03 0.133
    2019-04 0.116
    2019-05 0.143
    2019-06 0.140
    2019-07 0.183
    2019-08 0.197
    2019-08 Start Lupron/Casodex
    2019-09 Decipher score .49
    2019-10 0.007
    2019-10-14 Start salvage radiation 39 treatments 70.2Gy
    2019-12-06 Completed radiation

  2. #2
    Experienced User
    Join Date
    Nov 2017
    Posts
    99
    Hey Busby,
    I really did not experience any side effects from the radiation other than boredom. Hormone therapy has knocked the shit out of me, but radiation was no big deal.
    Eric

  3. #3
    At the halfway point, increased urgency and dribbling.
    During last two weeks, burning during urination, diarrhea.
    During last week, some incontinence when full. Fatigue.
    Two weeks after treatment, bad UTI.
    3-5 weeks after treatment, stomach issues and bad head cold.
    5 weeks after treatment, back to kegals with lots of drips, still have minor stomach issues. Normal bowel movements returning.

    RO told me last week of treatment that it was going to take 2 months to get back to normal.
    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 mostth's Avatar
    Join Date
    Feb 2019
    Posts
    133
    I had little side effects til last 2-3 weeks of treatment. Loose stools and major burning in urethra and worse while peeing I also had cramping that seemed to be in my scrotum but they assured me it was gas but I have never had gas pain that low. Now a week past last treatment I am still burning in urethra and when peeing which I asked about UTI and they said no this is radiation.
    DOB 9/6/59
    1/21/19 PSA 7.5.
    Bx 2/8/19
    G7 (4+3), 60% pattern 4
    Reffered to Mayo Clinic Rochester, MN
    RALP 4/3/19 Igor Frank
    Adenocarcinoma G8 (4+4)
    Mass (3 x 1.5 x 1.2 cm)
    Tumor involves both seminal vesicles.
    Extraprostatic soft tissues, SM, EPE, BNI, LNI (24): neg., SVI+
    pT3b pN0 Mx
    7/19 3mo PSA 0.74
    7/24 retest PSA 0.78
    8/14 3 mo. Lupron inj.
    9/10 Start radiation 38 doses
    10/31 Radiation complete
    11/5 2nd 3 mo Lupron inj.

  5. #5
    Like Enoch, I don’t recall any noticeable side effects. I think towards the end, my BMs were a bit less “formed, but that only lasted a few weeks and was not bothersome. This week marks one year from the end of SRT for me. I still have no noticeable changes,
    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 SEPT 2018. Finished SRT November 2018, Finished ADT Feb 2019
    T=7, PSA <.05, 5/19 T=48 PSA <.05, 10/19 T=97 PSA=<.05

  6. #6
    Regular User
    Join Date
    Jul 2017
    Posts
    27
    Busby,
    My experience was: peed a couple of drops of blood about two weeks in, bladder spasm and burning urination, bowel irritation, I got a case of the shingles (my first) and I got pretty tired toward the end of treatment. I worked every day trough out treatment. Do-able, but not fun.
    B.
    PSA 1/2013 was 3.6, DRE normal.
    PSA 8/2014 was 5.5, DRE normal.
    Open RP 11/20/2014. Age 55.
    Pathology from surgery:
    Gleason 3+4=7, Tertiary Pattern 5 (15%)
    Tumor size: 30x 24x 12 mm
    Extraprostatic extension present nonfocal (established, extensive) right and left posterior
    Seminal vesicles, bilateral +
    Positive margins, multifocal, Apical, Postero-lateral
    Perineural invasion +
    19 Lymph nodes, Negative, Tumor t3b
    Adjuvant RT, 1/16
    PSA 7/19, <0.01

  7. #7
    I wish I could tell you that I had 'no problems' like most everyone else, but of course... (call me Eeyore) my experience is always different. Bowel problems started the second week of radiation, and persisted throughout and after. The experience is chronicled here in one of the stickies: What I Need to Know About External Beam Radiation Treatments

    The first week went okay, then the dental problems began. A crown broke off during dinner and I informed the radiation nurse (an LPN) that I would need to start taking an antibiotic. She reacted visibly but said nothing. When I mentioned my frequent diarrhea to the RO he merely said "some bowel disruption is to be expected". It would have been nice to know about this beforehand, even though I had strictly followed their special low fiber anti gas diet.

    The RO recommended Activia yogurt twice a day. The big D was frequent and on some days I was so dehydrated that the techs told me if I came in "that way" the next day they would not treat me... but I never missed a day (though they had to change everyone's schedule when hurricane Irma knocked out power for much of the state). By the end of treatments I was bleeding rectally.

    I had been due for a colonoscopy and made much effort to get one in before RT started, but the RO had time restraints on when that could be done. Just getting to the point where I could hold enough water to undergo ART required two surgeries for an AUS. Schedules were thrown way out of whack. It was a struggle from the beginning. Three doctors told me that I was trying to do too much, so no colonoscopy before starting (it had already been a year since RP).

    My RO recommended that I maintain the special diet for a month after completion of RT. Six months after the end I finally had that routine colonoscopy and was diagnosed with radiation colitis, which is a step above the more common proctitis. A year later I had bowel resection surgery and have just recently begun to reintroduce some of the foods that I had eliminated (pun intentional)... salads, berries, dairy. Still have many restrictions.

    I now administer a private FB group named "radiation colitis and pelvic radiation disease", just in case you might ever need it... you know, just in case perhaps you end up not like everyone else who had "no problems". I'm not complaining (I hope), but have learned that Murphy seemed to have had me in mind when he postulated that "if anything can possibly go wrong, it will happen to YOU."
    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:
    began 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
    Senior User
    Join Date
    Feb 2019
    Posts
    300
    Will have to look back for when, but figured somewhere at the halfway point, had some very loose stools that was taken care of with a very low dose (about 1/3 tab) of Imodium once every other day. Not sure if any other side effects, maybe a little fatigue and a nap every other day or so. I am now about 5 weeks out and feel just fine with urine, poop, fatigue and strength.

  9. #9
    Experienced User
    Join Date
    Apr 2019
    Posts
    80
    I had 37 RT treatments to my prostatic fossa only since pathology did not suggest lymph node involvement.

    When stools loosened up a bit about three weeks in, the solution was to just decrease the Milk-of-Magnesia dose. Urinary urgency was very slowly increasing at this time, but I've had much more urinary issues post-RARP than most other FBs. About halfway through, and I noticed some minor fatigue, which eventually peaked near the end of treatment, where I was only working mornings for the last two weeks of treatment and not at all the last two days. Still managed to get myself out and exercising first thing in the morning -- it was probably easier since I had established the habit nearly three months prior. At this point, I was having some stinging pain when urinating, which AZO helped a bit, but not enough to put up with the bright orange color it gave to my urine. With two weeks left to go, I started having some minor dribbling, but a refresher with my pelvic floor PT got that under control. By about two weeks after the end of RT, the fatigue was mostly gone.

    The weeks after the end of RT was when side effects other than fatigue really started in earnest: minor amounts of blood in urine (usually after first BM of the day, but no UTI), urinary urgency and frequency, drips, dribbles, nocturia. Four weeks after the end of RT, and with the urinary issues still raging, I decided to restart pelvic floor physical therapy, which along with more healing time, has allowed me to start getting things under control.

    I am probably closer to worst case than average.
    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

  10. #10
    I had 37 sessions of radiation and experienced no side effects from it. Had started hormone therapy a couple of weeks before starting radiation and about the only side effect were mild hot flashes and some tiredness. Nothing too dramatic . . .
    Age at diagnoses: 68
    #pT3a N1 (2 of 27 LN) R0 prostate cancer Gleason 4+5
    - life expectancy > 5 years
    - pathologic T3 disease and node positive disease s/p prostatectomy
    - CT A/P and NM Bone Scan 8/17/2018 w/out e/o mets
    - DaVinci surgery at John Hopkins 8/22/2018
    - PSA (post surgery) 11/1/2018 undetectable (according to Johns Hopkins)

    11/28/2018 PSA 0.03 (Winchester Lab)
    03/12/2019 PSA 0.08 (Winchester Lab)
    07/27/2019 PSA <0.01 (Winchester Lab)
    09/25/2019 PSA <0.1 (WVU Cancer Center Lab)

    03/2019 - six-month Lupron injection
    04-06/2019 - 37 sessions of radiation (1.8 Grays each)
    09/2019 - second six-month Lupron injection

 

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