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Thread: Update after RP, Lupron, and RT

  1. #1
    Regular User
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    Mar 2019
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    17

    Update after RP, Lupron, and RT

    I have finally finished my 40 RT sessions. I should have posted this update sooner, but the fatigue just stayed with me. I am finally getting some energy back
    A quick recap - My surgery was on Jan 26, 2019 and a follow up PSA came up at 1.6 (3/27) and 1.8 (4/11). The Axumin PET Scan highlighted a lymph node and that’s when Oncologist recommended RT. He also started with Casodex for 2 weeks and then gave me Lupron shot (it will be every 4 months).

    I had multiple issues with Lupron -
    Hot flashes, increased sweating, tiredness, upset stomach, nausea, diarrhea, constipation, fatigue, trouble sleeping (insomnia), increased urination at night, dizziness, depression, memory problems. The Oncologist gave me Venlafaxine Er for the hot flashes. It cut down the intensity by about 80%.
    It is difficult to imagine diarrhea and constipation – both side effects. But for me that was almost every other day of either one of the 2.

    The RO recommended 40 sessions but reduced it to 39, due to the Jul 4th holiday!!😊 It started on June 24.
    I think I almost had all the items listed as Lupron side effects.

    The combination of Lupron and Radiation gave me a huge amount of fatigue. To quote from an old New York Times article by an Editor* who had prostate cancer - “I experienced fatigue that’s beyond fatigue, a fatigue so palpable it seems you could touch it. I wanted to shrivel into the fetal curl of a woolly-bear caterpillar, spin a cocoon of sleep ……”
    “At home, I had to accept that my fatigue was in charge. Mornings were especially slow as I creaked and winced out of bed. I felt like an old car that needed to have its crankcase oil heated before it would start”.
    I felt the same.

    The biggest problem with RT was being prepared with the ‘full bladder and empty rectum’. It was really humiliating (though the staff was very nice) to be taken off the table 2-3 times. I think in one of the initial sessions, I spent a couple of hours to finally get ready for the RT session. I know some folks go to work after the RT session, but I was just too tired. The RT has also put me back in the incontinence mode – not as bad as before but still annoying.

    On the positive side, I am slowly coming out of the fatigue mode. The loss of muscle mass is bothering me and according to the doctors the only solution is exercise. Hopefully I will get out of the fatigue mode soon and start the gym.
    My last PSA was <0.1 (8/27). Now it will be monitoring every 4 months and Lupron shots every 4 months for total of 2 years (I have already had 2 shots). Also just got the bone density test done (9/16) and now waiting for the result.

    This forum has been a big help with various inputs and technical references. It has been a source of huge support. Just couldn’t have gone through this journey without it.

    *The Many Shades of Cancer Fatigue, BY DANA JENNINGS, NY Times, FEBRUARY 17, 2009
    PSA 11/16 - 2.5; PSA 03/17 - 2.4; PSA 08/18 - 4.6; PSA 09/18 - 4.9;
    TISSUE PATHOLOGY 10/04/2018:12 samples - 4 with (4+4), 2 with (4+3), 6 benign

    BONE SCAN WHOLE BODY 10/15/2018: degenerative changes. No other findings
    CT ABDOMEN PELVIS W/ (ORAL/IV) CONTRAST 10/16/2018:no evidence of metastatic disease
    MRI PROSTATE WO/W CONTRAST 11/08/2018: suspicious for malignancy; Findings suspicious for a PI-RADS 5 lesion
    MRI THORACIC SPINE WO/W CONT 11/10/2018:no evidence of metastatic disease

    Surgery da Vinci Robotic Laparoscopic - 01/25/2019

    Post surgery Report:
    pT3a
    pN0
    EPE - Present, non-focal
    Margins - Involved by tumor at posterior mid and right anterior
    PNI - present
    No of lymph nodes examined 3; involved 0
    Total Gleason score 4+4 = 8
    Tertiary Gleason pattern 5(1%)

    PSA Post RP - 03/08/2019 - 1.6
    PSA - 03/22/2019 - 1.6
    Axumin PET Scan - 04/03/2019 - one positive lymph node

  2. #2
    Hi vj and congrats on getting through most of what was clearly a very difficult period! I hope your climb out of the "Welches valley of fatigue" (for those who remember) continues until you have your full energy level back. For newbies coming to the Forum I would point out your original PSA jump from '17 to '18 of 2.4 to 4.6, which lead to your diagnostic biopsy. The main purpose of these biopsies is to catch high-grade PCa early.

    Good job hitting any remaining PCa hard! Of course, it hit you hard, too, but here's to your PSA dropping off a cliff in the near future after being on the receiving end of your "triple whammy."

    All the best,

    Djin
    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(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
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  3. #3
    All I can say is wow. I was a month behind you with surgery, RT, and ADT and have rather minor SEs. Headaches the first 30 days after the injection go away and the hot flashes also diminish a lot. I have no fatigue from the ADT and some fatigue from the RT which does not interfere with my life or require naps.

    I have some emotional problems, but really can’t figure out if that is the ADT or not.
    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. (28 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    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
    Experienced User
    Join Date
    Nov 2017
    Posts
    96
    Dear VJ,

    I know exactly what you are talking about with the fatigue. I finished radiation in May and hormone therapy in July. I live in a three story townhouse and climbing the stairs felt like Mt. Everest to me. I would have to pause halfway up each flight. It is only the last week that I feel like I am starting to get some energy back. Hang in there, it will get better.

    Eric

  5. #5
    Senior User mostth's Avatar
    Join Date
    Feb 2019
    Posts
    129
    Cheers to you and hoping for good results. Push through and get back to "normal". I am just getting started.
    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.

  6. #6
    Thanks for the update, and know that you have my full sympathy for all you've been thru. It sounds almost as though you copied the SE's from WebMD. But believe it or not, it is actually refreshing to hear from someone else who has experienced the full force and fury of the adjuvant therapy. I've been feeling lonely in that there's only a few other guys here who even mention the "inconvenience" of SE's like incontinence and depression... and it's even something that I can only describe as envy when I read how many guys had everything go smoothly, and breezed thru it all... no revision surgeries or anything. I even had to research antidepressants to "discover" venlafaxine and begged several doctors before I found one willing to prescribe it for me.

    So I see you as one of our brothers in arms, one who has been on the front lines and returned from battle with a few scars. But I'm not all doom and gloom (despite how I come off). I'm happy to say that after completing RT and while still under the full influence of the RT & HT fatigue, I was able to treat the grandkids to a week at Universal Studios... and somehow survived. The fly in the ointment is that it's been nearly two years since my last Lupron shot, and my testosterone is still at castrate level. Oops.

    Anyway, here's hoping that your full assault against the PCa beast will be the end of the battle, and you will be cancer free forever. Good luck going forward!
    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

  7. #7
    hi vjbaba! Glad that you are over The Hump and are back on the road to "normal!"

    Questions for our education:

    - Was the (+) LN discovered by the Axumin Scan the only site of remnant PCa?

    - What areas underwent SRT?

    - Was Surgical retrieval of the (+) LN(s) an option?

    - Was focal radiation or any other focal therapy presented as an option?


    Re "Hopefully I will get out of the fatigue mode soon and start the gym:" Reverse this by starting back at the gym now! Exercise will help the fatigue!

    Good luck moving forward and best wishes for complete Cure! Keep us updated.

    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 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

  8. #8
    Regular User
    Join Date
    Mar 2019
    Posts
    17
    Sorry about my delayed response.

    Michael F,

    - Was the (+) LN discovered by the Axumin Scan the only site of remnant PCa?
    Yes, the (+) LN was discovered by the Auxmin Scan, and that was the only site that showed up.

    - What areas underwent SRT?
    The prostate bed, the suspect LN and LN areas in general

    - Was Surgical retrieval of the (+) LN(s) an option?
    No, because they were not sure if any other LNs could be potentially impacted and show up later.
    The was taken as an insurance policy. It has been some time and I see my Urologist/Surgeon on Oct 4 so I will follow up again.

    - Was focal radiation or any other focal therapy presented as an option?
    I am not really that familiar with the focal Therapy in this scenario. I see the Oncologist on Mon (lots of appts still) and will follow up.
    PSA 11/16 - 2.5; PSA 03/17 - 2.4; PSA 08/18 - 4.6; PSA 09/18 - 4.9;
    TISSUE PATHOLOGY 10/04/2018:12 samples - 4 with (4+4), 2 with (4+3), 6 benign

    BONE SCAN WHOLE BODY 10/15/2018: degenerative changes. No other findings
    CT ABDOMEN PELVIS W/ (ORAL/IV) CONTRAST 10/16/2018:no evidence of metastatic disease
    MRI PROSTATE WO/W CONTRAST 11/08/2018: suspicious for malignancy; Findings suspicious for a PI-RADS 5 lesion
    MRI THORACIC SPINE WO/W CONT 11/10/2018:no evidence of metastatic disease

    Surgery da Vinci Robotic Laparoscopic - 01/25/2019

    Post surgery Report:
    pT3a
    pN0
    EPE - Present, non-focal
    Margins - Involved by tumor at posterior mid and right anterior
    PNI - present
    No of lymph nodes examined 3; involved 0
    Total Gleason score 4+4 = 8
    Tertiary Gleason pattern 5(1%)

    PSA Post RP - 03/08/2019 - 1.6
    PSA - 03/22/2019 - 1.6
    Axumin PET Scan - 04/03/2019 - one positive lymph node

  9. #9
    Regular User
    Join Date
    Mar 2019
    Posts
    17
    Thanks everyone for the words of encouragement. And yes, it is a bit of relief to see that I am not alone with all the side effects. My only comfort is that the team of doctors (Summit Medical Group, NJ) treating me is friendly and competent.

    enock, in a way it is really funny but I also live in a 3 floor townhouse!! And I work from home from the top floor. The bad part is that the kitchen is on the 1st

    RobLee, yes, brother in arms. Thanks for the words of encouragement.
    PSA 11/16 - 2.5; PSA 03/17 - 2.4; PSA 08/18 - 4.6; PSA 09/18 - 4.9;
    TISSUE PATHOLOGY 10/04/2018:12 samples - 4 with (4+4), 2 with (4+3), 6 benign

    BONE SCAN WHOLE BODY 10/15/2018: degenerative changes. No other findings
    CT ABDOMEN PELVIS W/ (ORAL/IV) CONTRAST 10/16/2018:no evidence of metastatic disease
    MRI PROSTATE WO/W CONTRAST 11/08/2018: suspicious for malignancy; Findings suspicious for a PI-RADS 5 lesion
    MRI THORACIC SPINE WO/W CONT 11/10/2018:no evidence of metastatic disease

    Surgery da Vinci Robotic Laparoscopic - 01/25/2019

    Post surgery Report:
    pT3a
    pN0
    EPE - Present, non-focal
    Margins - Involved by tumor at posterior mid and right anterior
    PNI - present
    No of lymph nodes examined 3; involved 0
    Total Gleason score 4+4 = 8
    Tertiary Gleason pattern 5(1%)

    PSA Post RP - 03/08/2019 - 1.6
    PSA - 03/22/2019 - 1.6
    Axumin PET Scan - 04/03/2019 - one positive lymph node

  10. #10
    Thank you for the very helpful responses vjbaba! Very glad that the Axumin Scan identified the (+) Lymph Node in advance of SRT. I strongly suspect that (+) LNs are the main site of remnant/recurrent PCa following SRT. We have seen multiple cases of BCR following RP and later BCR following SRT.

    Perplexing cases are those: who (do not receive HT/ADT at any point*) following RP go on to achieve and undetectable uPSA which then rises and reaches BCR. Next step is SRT followed by an undetectable uPSA. Their uPSAs then begin to rise leading to BCR once again! I have a close friend who had this exact scenario. When his PSA reached 5.0, an MRI was able to identify a (+) LN. He was at one of the premier CA Centers and this still resulted in death within 3 years. Thus, something is either missed or "under-radiated" during SRT.

    * => not arguing for or against HT/ADT. Simply, their post RP & post SRT uPSA levels are "true" undetectable.

    The new imaging technologies such a Axumin & PSMA PET will vastly improve SRT planning and delivery.

    Get back to the gym. Looking forward to you reporting how much more energy the gym has restored to your daily life!

    Good luck!

    MF

    ps Heading to the gym now!
    Last edited by Michael F; 09-20-2019 at 12:11 PM.

 

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