Finally joining in...: I'm not new here... - Advanced Prostate...

Advanced Prostate Cancer

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Finally joining in...

Okay4now profile image

I'm not new here, but I have only been a spectator for a few years.

I'm 71, diagnosed with prostate cancer 20 years ago. After radical prostatectomy, clinical trial of chemo, and external beam radiation, the psa slowly rose until about 4 years ago, when I began Lupron injections. The psa went down, and has risen to a current 2.5. In a few weeks I will meet with my urologist and make a plan for the next treatment. My guess is that it will be oral chemo, one of the medecines ending in ....utamide.

30 Replies

You've lived with it for a long time, and I hope, much longer. There are no oral chemos commonly used for prostate cancer. Drugs that end in "utamide" (anti-androgens) range from mild drugs like bicalutamide to much more powerful ones like apalutamide, with wide ranges of efficacy and side effect difference.

Your status is called non-metastatic and castration resistant. There are 3 drugs that are currently approved for that: Nubeqa, Erleada, and Xtandi. Nubeqa has the advantage that it doesn't activate GABAa, meaning it is less fatiguing; and also, it doesn't penetrate the blood-brain barrier, meaning a lower probability of seizures. We have the most experience with Xtandi. I think it's very individual which of the 3 is best for you. If one doesn't agree with you, you can try another.

Okay4now profile image
Okay4now in reply to Tall_Allen

A friend was taking Zytiga (by mouth) and I think that's where my assumption about oral chemo began. I did take bicalutamide for a month before starting the Lupron injections, and it lowered the psa from 17 to 9.

I appreciate the information - practical and understandable. Thank you so much.

Tall_Allen profile image
Tall_Allen in reply to Okay4now

Zytiga is a hormonal agent. It acts on the androgen receptor both directly (by preventing intratumoral synthesis of androgens) and indirectly (by preventing adrenal synthesis of androgens). It was shown to be effective in cases like yours, but with the loss of its patent, I guess no one pursued the expanded indication with the FDA. Your oncologist could prescribe it off label, but with 3 other good choices, why bother?

Bicalutamide is prescribed at the beginning of Lupron therapy to mitigate the effects of the initial testosterone surge one gets with Lupron. But now with Orgovyx, I think its use will decline.

Okay4now profile image
Okay4now in reply to Tall_Allen

I'm thankful to have 3 choices! Much appreciated.

Recommended getting an oncologist, preferably one specializing in PCa,

Okay4now profile image
Okay4now in reply to 6357axbz

I am being treated at the VA, since I was exposed to agent orange, and most of the time I have seen residents. I put in a request and, to my amazement, was able to see a urologist at Vanderbilt University. I was concerned about long term effects of the adt on my heart, so he sent me to a cardio-oncologist. But I agree about an oncologist speciaizing in PCa.

Thank you.

Hope you'll be Okay4forever. I will be 71 in a couple of weeks. 24 weeks chemo, 3 years 10 months Xtandi after that. Psa 0.1 Extensive bone mets. Think you'll be in the game for quite a while longer. Best of wishes.

Okay4now profile image
Okay4now in reply to monte1111

You are kind, and very thoughtful. I wish you the best as well. Thanks for reaching out.

monte1111 profile image
monte1111 in reply to Okay4now

No. Thank you. First time I've been called kind, and very thoughtful on this site.

TomTom1111 profile image
TomTom1111 in reply to monte1111

I would never call you late for dinner.

monte1111 profile image
monte1111 in reply to TomTom1111

Naw. Never 'em. Microwave dings when I can watch seven cats watch me eat. Can't remember if you guys are roasting or freezing or drowning. We are melting. I have a map of NYC and a big cup of pins.

TomTom1111 profile image
TomTom1111 in reply to monte1111

First we will melt, the we will drown. I'm going to call the Greek cat this week...he needs his litter changed.

monte1111 profile image
monte1111 in reply to TomTom1111

You will probably need a dump truck.

TomTom1111 profile image
TomTom1111 in reply to monte1111

No probably about it..for sure...the type used in quarries.

Congratulations on your longevity. You could start with the usual ADT drugs, casodex, zytiga, xtandi etc.

Okay4now profile image
Okay4now in reply to Magnus1964

Thank you. I've had Lupron injections for 3-4 years, and I'm ready for the next step.

Sounds like you've done amazing and your an inspirational man you gives us all hope for the future that you can live with cancer. Long may it continue and thank you for sharing your story. SheilaFx

Okay4now profile image
Okay4now in reply to Realistic

Thank you very much.

God bless!

Okay4now profile image
Okay4now in reply to sm60


Friend your story is similar to my dad. I got him off of Lupron. We used 8 to10mg of topical progesterone. Stayed in remission until he died at age 93. You must put the progesterone on a different spot every time you apply it. It up regulates a gene p53 that is responsible for a apoptosis and down regulates a gene p13 which turns the cancer on. I use it prophylactically. More is not better it will make the cancer grow. No the Urologist don't use it or don't know it!

MateoBeach profile image
MateoBeach in reply to jhrocket

Interesting. I need to look into progesterone for PC more deeply

Okay4now profile image
Okay4now in reply to jhrocket

Never heard of it, but I will look into it. Thank you.

Miky54 profile image
Miky54 in reply to jhrocket

Thank you for the information, could tell me which progesterone you used please. Mike

jhrocket profile image
jhrocket in reply to Miky54

I use Now for 2 reasons......Its easy to measure and its liposomal meaning it lasts longer but they are ALL THE SAME!. Remember 2 things 1. dosage 2. you must move it around I promise it will not work if you put it on the same spot all the time...GOOD LUCK!

Thank you for your service.

Welcome Okay4. Thanks for stepping out of the shadows with us.

Okay4now profile image
Okay4now in reply to MateoBeach

Thank you, I'm enjoying the company already!

I'm 70, had prostate removed at 65. At 68 cancer moved into lymph notes, immediately had 40 radiations sessions (over 8 weeks), and started Eligard (45mg) every 6 months. At age 70, started 60 mgs of prolia every six months, plus 1000mgs calcium and vitamin D, daily. I'M THRILLED YOU'VE LIVED FOR 20 YEARS! That is great news! You're an inspiration to me! 👍😀

Thank you so much, glad to be an inspiration! I have three main reasons to live as long as possible - my three beautiful daughters.

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