Decision time. ADT holiday or add Secondary Agent? Please advise!

Options
SV
SV Member Posts: 183 Member
edited August 2022 in Prostate Cancer #1

In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3. Subsequent PSA was non-detectable as tested every three months. Five years after surgery I felt confident enough to start TRT.


For the next ten years PSA was non-detectable with no incontinence and an active sex life. In 2019 the cancer suddenly went active again with PSA rising from zero to 2.0 in 18 months. PET scan revealed two lesions in my seminal vesicles so I went on Lupron for six months. After four months, I had 35 Proton treatments targeting seminal vesicles and prostate bed. A few months later when the Lupron wore off, and my testosterone rose, my PSA started rising immediately. A new PSMA scan at UCLA June of my 2020 revealed a microscopic lesion in right pelvic bone.


Three treatments of SBRT was used 6/20/2020 without ADT because several doctors said it would not be needed on such a small lesion. But right after SBRT treatment my PSA continued to rise monthly from .29 to 4.9 over six months. (It was a slow rise at first but the last two months my PSA skyrocketed). No one could account for the dramatic rise except that during that time I had a severe eColi blood infection treated with IV antibiotics.


New PSMA scan 10/18/2021 indicated two small lesions in my lower spine and one in my hip bone. So I started Orgovyx 10/27/2021 with three treatments of SBRT performed at UCLA 18 days later. Bloodwork on the day before SBRT showed my PSA had dropped to .070 along with testosterone to almost zero in 17 days. PSA 05/05/2022 was .008 and testosterone <7 ng/dL.


Even after SBRT, we realized that spinal mets means the possibility of lingering rogue cancer cells or micro tumors too small to see on PSMA scans. We are hoping that those can be starved with Orgovyx. Dr. Steinberg at UCLA thinks SBRT plus Orgovyx is all that we need. My oncologist, Dr. Dorf, says a secondary agent is not necessary after SBRT. She prescribed six months to one year of Orgovyx with 90-days shots of Xgeva. My hemoglobin is way down but other markers are okay. I’m now at the seven month mark on Orgovyx and will be seeing her this week to ask about an ADT holiday.


I’ve heard about the PEACE study and how a secondary agent is advisable yet when I brought that up to her a few months ago she said that those conditions don’t apply to my case.


So far I am tolerating the ADT side effects well with no depression or anxiety, although sometimes I experience brief afternoon fatigue and of course those pesky hot-flashes. I lift weights (resistance bands) and hike daily along with wrestling practice twice a week. There has been no weight gain and I am very fit but endurance is declining. Getting up too many times a night to pee is aggravating.


What do you guys think? ADT holiday or add a secondary agent?

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    Options

    Hi SV,

    Good to know that you are still in one piece 😉.

    In my lay opinion, I would suggest for you to continue the treatment as scheduled, and continue the physical program (weights and daily hiking).

    Vacations on ADT are preferred when the side effects become nasty or when the period on LHRH agonists/antagonists is too long over 18 months. Your lipids seems good too in your overall experience. Apart from that, a third drug performance could be lost due to Xgeva interactions.

    I wonder about your PSA and Testosterone levels. These markers are importante references to access the progress of the therapy.

    Best wishes in your continued fighting.

    VG

  • Clevelandguy
    Clevelandguy Member Posts: 1,076 Member
    Options

    Hi,

    Sounds like you are tolerating the ADT fairly well, subsequent PSA tests should confirm if the ADT is definitely helping. If it was me I would stay on the present course. If you have doubts you could get a second opinion from different doctors at another hospital network.

    Dave 3+4

  • SV
    SV Member Posts: 183 Member
    Options

    Thanks amigo. I'm going to have a long talk with my doctor this week but I am certain to at least complete a full year of ADT.

  • SV
    SV Member Posts: 183 Member
    Options

    Thanks. Too bad there aren't any reliable studies on the ADT holiday issue.

  • SV
    SV Member Posts: 183 Member
    Options

    Yes that is what my oncologist says--no definitive studies either way. Yet logic dictates the longer the time on ADT the better chance--just no proven cutoff. Most oncs say for me a year is sufficient. They also cannot confirm if cancer does come back--is it stronger or weaker.

  • SV
    SV Member Posts: 183 Member
    Options

    PSA is still .008 and testosterone nearly zero. But the hot flashes though the night make me wake up too many times. As of now 4 more months of Orgovyx!

  • centralPA
    centralPA Member Posts: 301 Member
    Options

    I’m not in the situation you are in, but I do have many years experience listening to my wife complaining about hot flashes and mostly blowing her off. I guess I feel bad now. :)

  • SV
    SV Member Posts: 183 Member
    Options

    Life would almost be normal if I could stop the hot flashes.

  • Old Salt
    Old Salt Member Posts: 1,398 Member
    Options

    Hang in there!

    Exercise might help and is good in other ways as well.

  • SV
    SV Member Posts: 183 Member
    Options

    Thanks! As it is, I wrestle three times a week, lift heavy weight three times a week, hike three miles 6 days a week, practice yoga and meditation daily and with help from Vitamin V, still do the wild thing with my 25-year-old girlfriend. Counting down the three months left on Orgovyx. When T returns will shall see cancer shall never return!

    The power of positive energy...if we can believe it, we can achieve it.

    What I'd give for a good nights sleep where I don't have to pee a dozen times. Ho Hum

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    Options

    Hey, SV

    I understand your "desperation" with the side effects. You are not alone.

    We survivors all experience those unwated occasions. I have been "enjoying" them for more that 20 years.

    On-drugs period is the worst 😫. And getting older brings mixed (other ) experiences difficult to adapt. We can't avoid them and our body sensors seem to become "vicious" taking us to pee when it's unnecessary.

    You need something less common for distraction. Go and visit Machu Picchu in your bike. It may give you some relief.

    Thinking of yah.

    VG

  • SV
    SV Member Posts: 183 Member
    Options

    Thanks amigo. Planning to be on the road for the next few months but no more motorcycles...


  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    Options

    Great, with a carrying toilet you will have no excuses, but for Machu Picchu you need something that climbs. You have to return to your adventures.

    😁😄

  • SV
    SV Member Posts: 183 Member
    Options

    It’s pretty much considered sacrilege to sell your motorcycle and buy a trailer. But after five years riding around the world living in a one-man tent, traveling with a kitchen, refrigerator and most importantly a bathroom is a welcome change.

  • SV
    SV Member Posts: 183 Member
    edited August 2022 #16
    Options

    After showing non-detectable for the last ten months on Orgovyx, my PSA has started to creep up. When it first showed a rise we re-tested a week later to discover that there was a marked increase in upwards climb. Given that my prostate was removed twelve years ago and my testosterone showed <10 in the same test, how much trouble am I in? (My oncologist is on summer vacation)


  • Old Salt
    Old Salt Member Posts: 1,398 Member
    Options

    Sorry to read that our PSA is now detectable. But it is still very low; perhaps it will stabilize in the near future (ask Vasco about this). Anyway, I don't think that there are scans that would give meaningful data at this point.

    I realize it is hard to have to wait for a consult with your oncologist.

  • VascodaGama
    VascodaGama Member Posts: 3,689 Member
    Options

    Hi again,

    I agree with Old Salt. The PSA is still very low and it may plateaus at some point.

    T <10 indicates that Orgovyx is still doing its job in maintaining low levels of testosterone in circulation. I would think that other hormones are feeding the bandit.

    Typically the thyroid substitutes bad functioning of the testis to provide enough hormones for the well function of our "body machinery". We can get a perception of such when we start growing a belly fat arround our waist.

    There have been similar occurrences in guys using firmagon (another LHRH antagonist). Some oncologists change antagonists to agonists with successful results seen in periods lasting two or more years. (Agonists like leuprolide create havoc in the pituitary managingto get T lower than 1 ng/dL).

    In other words, the bandit may have learned starting feeding in tiny amounts of hormones in circulation. I would check the thyroid T4 and T3 (in particular) to verify any variation above or under normal levels.

    I do so every 10-months because of my CKD status. Lacking of hormones could be the reason for your spiraling creatinine levels (kidney issues we discussed before).

    In any case, the psa is increasing but still too low to consider any move. Give time a chance. Go and visit Mount Whitney.

    Regards

    VG

  • SV
    SV Member Posts: 183 Member
    Options

    Thanks guys. I guess we have to wait for another monthly PSA test to find out more. My primary care doctor was concerned about creatinine levels and ordered a CT scan which found four kidney stones lodged in my left ureter. They were unable to pass for the past 7 months because the ureter was tapered. Last week my urologist lasered them and left a stent in with a string attached so I could remove it myself while traveling. I did so yesterday and feel much better with less urgency to pee. Next blood test should be very revealing.