After recurrence, what else besides radiation and 6 month Orgyvx (ADT)

Posted by natem @natem, Aug 31 2:23pm

I had RP in July 2013 with Gleason 9 at 53 years of age. Since then my PSA was always <.1 until Nov 2021 it hit .2. I met with Rad ONC after psa reached .3 six weeks later. I started 6 month regimen of Orgyvx and Versa radiation machine. PSA after completion was <.02, or undetectable. I believe Orgyvx alone can do that, so I'm not sure how effective the radiation was. They found small spot in distant lymph node that was level 3 via psma PET scan, inconclusive, but I suspect they believe that was the origin. I have another 6 month psa test scheduled in Jan 2023. I believe they think I only have a 25%-35% of it being cured due to lymph node involvement. I'm wondering why they don't do something more aggressive like a Chemo or something while I'm presently in pretty good condition. Anyone been here, or had experience with this? Thanks much!

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Good question. I’ve undergone surgery and 4 reoccurrences so I’ve now had 5 rounds of different treatments but no IV chemotherapy. They wouldn’t treat breast cancer this way or any other cancer I can think of. I think they short change us with prostate cancer. Society kinda just blows us off which also is reflected with most oncologists.

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5 years ago had radiation 40 sets It metastasized one year ago to my L2 lumbar July 1 2021 did 2 sets of intense radiation blowng off 3.5 cm cancer Back on Zolodex 3 month injections PSA back to 1.2 from 25 high. I am castrate sensitive Zolodex working so no need for Enzalutimide which is chemo in a daily pill and affordable No need for chemo as once your on it the clock is ticking my doctor son says

However looking at adding Darolutimide as it is an inhibiter like Zolodex but works differently Its just been approved for castrate sensitive as before only for castrate resistive Never should have taken me off Zolodex is my view

I feel great PSA 1.2 all year No side affects

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@round5

Good question. I’ve undergone surgery and 4 reoccurrences so I’ve now had 5 rounds of different treatments but no IV chemotherapy. They wouldn’t treat breast cancer this way or any other cancer I can think of. I think they short change us with prostate cancer. Society kinda just blows us off which also is reflected with most oncologists.

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Just saw this " Relugolix Approval Expected to Alter Treatment for Advanced Prostate Cancer Best to reduce testosterone which as you know is the fertilizer for prostate cancer

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@melcanada

Just saw this " Relugolix Approval Expected to Alter Treatment for Advanced Prostate Cancer Best to reduce testosterone which as you know is the fertilizer for prostate cancer

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Thanks for the info I will keep it in mind however after having a total of 42 months of intermittent various forms of ADT I am looking for something else.

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Just keep PSA around 1.2 Never above 4

I swear by Zolodex injection every 3 months They come to my home

No side affects PSA dropped from 25 to 1.2 quickly and is stable 12 months now

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Have they sent blood out to Foundation One for genomic testing? DNA mutation which would possibly show an immunotherapy option? I believe that chemo should also be started sooner in many cases. I think for me I would have had a better outcome, but this is just my opinion and experience.

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@rso

Have they sent blood out to Foundation One for genomic testing? DNA mutation which would possibly show an immunotherapy option? I believe that chemo should also be started sooner in many cases. I think for me I would have had a better outcome, but this is just my opinion and experience.

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I think the reason IV chemotherapy is known and for the most part is labeled the last ditch effort is because they wait so long to use it. After the body has been weakened already by months or years of ADT etc. How rare is it to find someone on Lupron that says they feel just fine? Plenty of energy and stamina. I know it’s had its toll on me and battling the side effects of IV chemotherapy now would be a hell of a lot harder than a few years ago before I had all the ADT drugs.

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Hi, how many radiation treatments did you have and any bowel or urinary issues? Thanks

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@bettwils16

Hi, how many radiation treatments did you have and any bowel or urinary issues? Thanks

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Not sure if this is to a specific individual but here's a link to a write up I did of my recent experience and side effects.
https://connect.mayoclinic.org/comment/741265/

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@bettwils16

Hi, how many radiation treatments did you have and any bowel or urinary issues? Thanks

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Forgive me if your question wasn't directed to me. But, I had approx 39 radiation treatments. I had more frequent urination during treatment and some diarrhea, both pretty much back to normal a couple of months (presently) after completion.

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