A newer phase in my Systemic treatment now with metastasis in bone

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Comments

  • SV
    SV Member Posts: 184 Member

    congratulations on the PSA drop. Your incontinence will probably correct itself when you go off of ADT.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member

    Sorry for the difficulty that you are experiencing. Hopefully the kegels will help. You may wish to consult with a physical therapist to make sure that you correctly do the kegels
    I don’t know what the cause of incontinence is in your case, but, years afterward, incontinence can result from surgery.

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member

    Thanks Old Salt,

    Yes, I wasn't expecting this occurrence after my experience of twelve years ago on ADT. This is a very inconvenient situation in my social life. I have rejected golfing ⛳️ invitations or hiking in group. Always mentally worried if I cause or smell urine.

    How about you, how is things going in your 80th ?

    Ths

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member

    Thanks for the opinion.

    I never heard about such late side effect from surgery. The oncologist commented about a side effect from radiation as it tends to be progressive. My wife says that it is aging.

    I believe that this is a cause of the low count of testosterone/androgens in circulation. The problem may be more prominent due to the missing urethra sphincter (or part of it), dissected in the prostatectomy of 2000. The bandit was detected this time at three tiny tumors at the urethra which tissues are now in a "dormant" status.

    Regarding kegels, the bladder holds about 400cc so that I force 5 or 6 stops each time I pee. The ocasional incontinence occurs when standing, when I feel it passing at the tip of the penis, leading me to contract the pelvic floor muscles. Sorry, to late.

    I have no urgency during the day and at night I get up about 3 or 4 times but I am dry when sleeping.

    Ths

  • Josephg
    Josephg Member Posts: 471 Member

    I'm sorry to read about your bout of semi-incontinence, Vasco. My incontinence started 10+ years, right after surgery, and became the new normal for me a number of years back, and my quality of life adjusted to it. I don't even think about it now, except to remember to buy my box of Depends (IMO, the best brand to buy) on time.

    I'm glad to see that your PSA is under control again, as that is the most important aspect of your current phase of your PCa journey. Stay the course and continue to look forward to your next hormone vacation. I will be seeing my Oncologist this week for my 3 month blood draw, and I'm hoping that my PCA remains undetectable, and that my Testosterone rises above 26, which it was 3 months ago. This visit will mark 18 months since, I ended my 2 year hormone cocktail protocol of Lupron, Zytiga, and Prednisone.

  • Clevelandguy
    Clevelandguy Member Posts: 1,233 Member

    Hi Vasco,

    I too drip a drop now and then when I am hiking or lifting heavy objects. Dry when sitting or sleeping, so far a light Depends pad covers 99% of my needs. If I am going to be on my feet for several days in a row I switch to max pad which does a great job. As your wife stated it could be a combination of events, age, ADT drugs, ect. I have heard that some guys use a light pad inside of an adult diaper for good protection. There are also several new types of deodorants here in the states for all over your body which will help with odor. Hate to see you not golfing and hiking because of leaks or odors. Maybe a litle extra splash of cologne might help? Remember don’t back down but adapt. Good luck……..

    Dave 3+4

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,824 Member

    Vasco,

    Delighted in your decades-long successes against 'The Bandit.' I thank you for checking in,

    Max

  • hunter49
    hunter49 Member Posts: 251 Member

    Vasco the beast always has a price but you seem to be handling it well. Did you ask your doctor about any type of surgically implanted clamp?

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member

    Yes, I will be waiting for the news but I belive that we will be celebrating a remission again. 🤞✌️

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member

    Thanks Dave, it seems that I could adapt better to ED and annoying fatigue than to this most inconvenient situation.

    Apart from the clip that gives me the assurance of being dry while walking or caring about my veggy garden, I use a pad. The clip tends to uncuff when seating and the penis retracts. Difficult to adapt.

    Smelly or not, I will survive.

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member

    I am still waiting for that consultation in the NHS. I am aware of implants discussed by our "comrades" here in the forum but I would like to wait for the timing when I stop ADT. I am convinced that I will get to normalcy then.

    Just hoping 🙂

  • VascodaGama
    VascodaGama Member Posts: 3,718 Member
    edited December 2024 #53

    I would like to inform those following my story that I continue with the Zeros. The PSA in December was again undetectable (<0.01 ng/ml; T=14 ml/dL).

    I have noticed some interaction among the pills that I have been taking, particularly between the antiandrogen Erleada (apalutamide) and the blood pressure blockers that increased the numbers over the 170/105.

    The annoying incontinence continues. I was told again, this time by an urologist, that the radiotherapy of 2006 could be the cause as radiation tends to be "progressive" (a late side effect). However, the issue seems to be neurologic, related to loss of sensation to contract (automatically) the muscles of the bladder sphincter. They work when seated or in lying position.

    Well, in the ancient practice of the mystical "Numerology", 2025 is a number of zeros. 2+0+2+5=9=0=nothing

    In the next year we will have to be content with what we are today. 😁😇

    The new year, according to Chinese tradition, will be full of mysteries. It's the year of the 🐍 snake. The year of the introverts.

    Those who believe or think they know everything.

    From Portugal, I wish that the new year brings to everybody here, and their families, healthy new adventures.

    Best wishes for a Happy New Year.

    VGama

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,824 Member

    I will take this news as a New Years gift. An amazing journey continues. We love ya, man

    Max

  • bdhilton
    bdhilton Member Posts: 867 Member

    VG...pleased to hear your treatment(s) continue to workkeeping the Beast at Bay. I can relate to the loss of sensation with my numerousradiation treatments to my pelvic area but no incontinence for me to date.

    Happy New Year and all thebest for 2025!

    BD

  • hunter49
    hunter49 Member Posts: 251 Member

    good news happy new year VG. Just got my recent test after 1 year ending radiation still undetectable

  • Josephg
    Josephg Member Posts: 471 Member

    Great news on your PSA Vasco. I wish you a continuing journey of undetectable PSA tests for 2025 and beyond.

  • lighterwood67
    lighterwood67 Member Posts: 397 Member

    Well, Happy New Year's VGama. It never ceases to amaze me of all the trials and tribulations that occur with the "Beast" that we play host to. Certainly the contributions of the contributors on this site to help each other out goes far beyond what a normal person could do. In your case, you have without a doubt helped many address this issue. Best of luck to you and yours on your journey. May you have many blue skies. From the pier this morning.

  • Old Salt
    Old Salt Member Posts: 1,552 Member

    FELIZ ANO NOVO

    May the PSA test results stay where they are right now. I tend to agree that some of these side effects you mentioned are due to 'advanced' age. In this context, in the USA we often express this status as

    getting old is not for suckers

  • SV
    SV Member Posts: 184 Member

    happy new my brother and thank you for all the help and advice you provide to our fellow cancer warriors

  • Steve1961
    Steve1961 Member Posts: 639 Member

    Nice to hear from you . thank you for all your advice that you had given me over the years. I am very pleased to say that I am blessed after getting the chance to have salvage surgery to have foind an excellent surgeon and to nave this surgery go extremely well the pahology report come back clean . and on top of all that have very good insurance to pay for the whole thing you have to look in the mirror and just realize how lucky you are and as of tomorrow, I will be going for my nine month follow up. Hopefully I will remain cancer free, everybody’s journey is different. I just hope they all end up well.