Recently diagnosed with Gleason score of 9

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  • SV
    SV Member Posts: 182 Member
    edited October 2021 #222
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    And the news gets worse ...

    Just got results from PSMA scan performed at UCLA. RO says two small mets in lower spine and one on pubic bone. Doctors claim all are treatable with their SBRT along with ADT but they want a neurosurgeon supervising due to the obvious complications. The issue now is what's best radiation for spine mets? SBRT docs say SBRT and of course Protom doc says Proton. What do you guys think?

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #223
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    .

    I suggest that you consult with michael steinburg RO at ucla.  As you probably already know, he specializes in SBRT and is head of the department. 

    Information note about LU177 that Vasco mentioned. This treatment is available at UCLA. 

  • SV
    SV Member Posts: 182 Member
    edited October 2021 #224
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    Latest PSMA scan says I have

    Latest PSMA scan says I have two small lesions in my spine and one in my hip bone. PSA is skyrocketing--- .68 three months ago to 2.7 two weeks ago and now 4.9. Started Orgovyx yesterday. How much trouble am I in?

     

  • Old Salt
    Old Salt Member Posts: 1,327 Member
    edited October 2021 #225
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    Trouble is hard to predict...

    Did you follow up on hopeful's (solid) advice?

    The (Orgovyx) hormone therapy should bring your PSA down considerably and should be effective until you develop resistance. Hopefully, this will take a long time.

     

  • SV
    SV Member Posts: 182 Member
    edited October 2021 #226
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    How long does it take for

    How long does it take for Orgovyx to lower PSA. I'm told it's much quicker than Lupron and there is no testosterone flare. 

  • SV
    SV Member Posts: 182 Member
    #227
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    Dr. Steinberg did my SBRT

    Dr. Steinberg did my SBRT seven months ago at UCLA. He wants to do SBRT again and is really pushing hard to do it immediately. Protons doctor who did my first radiation for seminal vesicle invovlement two years ago says wait a few months to let the Orgovyx soften up the target. A subsequent MRI yesterday shows one tumor touching a nerve which accounts for the severe lower back pain. Who is more correct?

  • VascodaGama
    VascodaGama Member Posts: 3,651 Member
    edited October 2021 #228
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    BP, thyroid and renal needs vigilance

    Hi,

    Apart from you only one survivor here has reported taking  orgovyx. This is a similar drug to Firmagon (LHRH antagonist) with similar symptoms. The half-life is about 3 days so that you can always stop taking the pill if you feel uncomfortable with its symptoms. Discuss this matter with your doctor in advance. 

    In any case, ADT is palliative and would not kill the bandit. You can check with your previous radiotherapist about possibilities in having those spots radiated, if these stand at appropriate areas. SBRT recommended by above survivors has been successful in spot radiation. 

    Orgovyx will require you to include in your blood test the items for thyroid and renal markers. Metastases in spine affects your blood count. Have it checked too. 

    Best

    VG 

  • VascodaGama
    VascodaGama Member Posts: 3,651 Member
    edited October 2021 #229
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    Get answers on risks before advancing
    Hi,

    I got the copies you mail me.

    The results of bone metastases found from scans are typically rechecked with a biopsy but this time it seems that both scans confirm the two spots as cancerous. The PET (68Ga-PSMA 11) is very specific with SUV of 15.5 and 12.7 (SUV above 10 declares cancer). These spots are new things but I think that you should inquire with your previous radiotherapist on any risks that previous radiation could bring in. In your shoes I would choose SBRT instead of proton. The Bragg peak capability in proton is not relevant or important at the location of the spots.

    Best

    VG 
  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    edited October 2021 #230
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    Overkill
    Hi there,
    You do have to bear in mind that GnRH antagonists work indirectly by blocking the pituitary from stimulating the testes, thus there is a considerable lag between stopping the drug and normal service resuming.
    Firmagon has a half life of around a month, but there was an experiment with sex offenders and a shot once every three months was sufficient to keep them castrate, I know of one prostate cancer patient who is economising by having a shot every three months and he is effectively castrate.
    I would guess that after taking Orgovyx for a few weeks, it will take several months for testosterone to return, probably not to the levels you had before you started.
    Extended periods on the drug could result in permanent castration.
    You may find the results of this trial interesting;
    https://www.onclive.com/view/oral-hormonal-therapy-breaks-new-ground-in-prostate-cancer

    Best wishes,

    Georges
  • SV
    SV Member Posts: 182 Member
    #231
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    Abrigato! Your reply is very

    Abrigato! Your reply is very helpful and exactly what my MO at City of Hope stated. Doctors at UCLA want to proceed immediately and Proton doctor said it was better to wait a few months to allow ADT to shrink and weaken the tumors. UCLA says that is the older way of thinking.

  • SV
    SV Member Posts: 182 Member
    edited October 2021 #232
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    Thanks. But I have heard that

    Thanks. But I have heard that using Orgovyx allows a quicker return to normal testosterone levels, as in a few weeks as opposed to many months when using Lupron. 

  • Old Salt
    Old Salt Member Posts: 1,327 Member
    #233
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    It varies

    But I have heard that using Orgovyx allows a quicker return to normal testosterone levels, as in a few weeks as opposed to many months when using Lupron. 

    How long will you be on ADT/hormone therapy?

    Return of testosterone depends on many factors; among others

    Age

    How long the patient has been on hormone therapy

  • SV
    SV Member Posts: 182 Member
    #234
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    Orovyx

    I am scheduled for six months and I am a whopping 69 years old!

  • SV
    SV Member Posts: 182 Member
    edited November 2021 #235
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    PSA Dropped!

    This is my latest PSA two weeks after begining Orgoviyx.(Testosterone dropped from 380.56 to 11.40)  Dr says at least six month sentence is needed. I had 3 SBRT radiation teatments at UCLA last week for two lower spine mets and hip bone met. Should I continue ADT for a total of one year?

      12/8/20 3/10/21 4/6/21 4/28/21 5/18/21 6/21/21 7/29/21 10/11/21 10/27/21 11/15/21 
        <0.008 0.130 0.290 0.390 0.440 0.540 0.680 2.770 4.920 0.070

     

  • Old Salt
    Old Salt Member Posts: 1,327 Member
    edited November 2021 #236
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    Just an internet guy...

    I haven't looked at trustworthy reports in the medical literature, but considering that your cancer has metastasized, I personally would go with one year. But you don't need to make a decision now and your doctor(s) should have the last word on this issue.

    Serious exercise to counteract the side effects of hormone therapy is highly recommended, of course.

  • VascodaGama
    VascodaGama Member Posts: 3,651 Member
    edited November 2021 #237
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    Avoid refractory

    Hi,

    "... Dr says at least six month, ...  ... Should I continue ADT for a total of one year?"

    I think that the decision is yours. However you need to consider and avoid becoming refractory to the drug's therapy benefits. 

    LHRH antagonist (Orgovyx) and agonists (Lupron) are effective in lowering the testosterone (castration status) which turns to be beneficial in lowering the progression of the disease but it doesn’t eliminate it. There will come that day when the bandit is no more dependent on testosterone to be active and progresses. In other words, these drugs do the intended job well but obscure the real actions occurring behind.

    The PSA continues to be the marker to follow. Any increase of the PSA under a castration status (T<20 ng/dL) signify refractory in the treatment requiring attention and in need of a newer strategy to fight the disease.

    ADT aims in depleting the body from circulating androgens or in disturbing its manufacturing , obliging the bandit into submission and death. But,  just like normal cells, cancer holds those switches to adapt and survive, to the extreme of creating ways to feed themselves. This condition is seen frequently in cases of prolonged periods on ADT therapy.

    You need to check the PSA periodically. T can be checked every six months. 

    Please note that these drugs require constant concentrations of its substance in the bloodstream to be sufficient in its purpose. The daily Orgovix pill should be taken every day without missing.

    Best, 

    VG 

     

     

     

  • SV
    SV Member Posts: 182 Member
    #238
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    Thanks again!

    So maybe in order to keep ADT working for decades to come it is better to do those holidays to see what happens? Does shorter times on ADT extend the usefullness of the drug?

  • VascodaGama
    VascodaGama Member Posts: 3,651 Member
    edited November 2021 #239
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    Get advice from the experts

    I believe that intermittent ADT extends the usefulness of the drugs, extends survival, avoids refractory, gives relief of the side-effects and avoids the risks caused to other organs or prejudice in other health issues. 

    However, the concept/protocol of intermittent ADT is not based on "shorter times" as you comment.  It needs to be adapted to each case differently, depending on the patient past and present condition, as well as involving considerations to future circumstances. Medical oncologists (like Dr Myers and Dr Scholtz) are the experts on intermittent protocols. My doctor uses a protocol similar to the one of Dr Myers in regards to the length of the period on drugs and off drugs. He uses the PSA level instead of fixed pre-set periods to regulate the administration of drugs.

    You should get advice from a medical oncologist. ? 

    Best

    VG 

  • SV
    SV Member Posts: 182 Member
    #240
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    Metobolic.jpg
    CBC.jpg

    I've been on Orgovyx and Xgeva for five months and will stay on for at least a full year. I've been training hard with cardio and weights and feeling pretty good until getting fourth COVID shot ten days ago. Previous shots were without any side effects but this last shot floored me for 24 hours. Here's my latest blood work which I'm not sure how to interpret. What do you guy think?

  • VascodaGama
    VascodaGama Member Posts: 3,651 Member
    #241
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    Hi SV

    In your shoes I would check the kidneys filtration rate and creatinine with urine from 24 hours. The numbers above may reflect kidney disease stage 2. You may also check the uric acid as it may accumulate due to lack of filtration.

    Best,

    VG

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