Time to challenge SOC?

[Lewellen]

I have had 2 shots of 3 month Lupron so far. I'm seeing my Onc for a special session because my T has only dropped to 38 and my PSA to 1.0.I am feeling drawn to TRIPLET therapy or a form of BAT. But I already know that my team is motivated towards Cryoablation of my previously radiated prostate (2015) before

Doing anything else.

MO, RO, and Urologist are all of the opinion that until the prostate stops producing cancer there's no point in doing radiation.

Even setting aside my suspicions about how this medical group relies on Cryotherapy, my understanding from reading here is that metastatic PCa grows from met to met.

So I have questions 😆!

1) Just how irrelevant has my prostate become in "spilling" cancer? In 2015 I was Gleason 7 (3+4) in 11 out of 11 biopsy cores. From my reading of current info, I have a 1.5cm nodule in there somewhere.

2) I have half a dozen pelvic lymph mets, and one "a bit higher up". So my thought is to skip the prostate cryo, get a full pelvic bed radiation, and maybe a focus beam zap of the nodule.

Then Cryo on the one up higher. Or Yervoy for that one? Does that make sense as a proposal?

3) TRIPLET is best as an "early" treatment approach, right? Am I too late for it? Mets were discovered in 10/21 with a NM PET/CT AXIUM SB-MT scan.

4) Is that 10/21 AXIUM scan considered up to date or should I request a current scan before we go digging around? And what kind of scan?

(I appologize for my scanty history in the bio. I need to get that detailed now that I realize I'll be on board here for a long time. At least that's the plan 😜!)

So many options going forward. I'm glad for that and hope me and my team remain flexible. Looking forward to your opinions, many thanks!

[Tall_Allen]

I'm not sure I understand your situation. As I understand it, you had primary IMRT to your prostate in 2015. You now have a recurrence, with cancer detected in your prostate and pelvic lymph nodes. After 2 shots of Lupron, your T is at 38 and your PSA at 1.0.

You can have whole pelvic radiation with a boost to known sites in the prostate and nodes. That should be accompanied with 2 years of Lupron and abiraterone.

[noahware]

Sorry. I can't answer any of your enumerated questions. But I do have a comment: if Lupron alone is only getting T down to 38, you might consider switching to Firmagon (or even adding Zytiga, or both).

I think you want T under 20, correct?

One report says, "Lupron (the ‘agonist’) causes serum T to drop to below 50 ng/ml in a week or so. Firmagon (the ‘antagonist’) causes an abrupt fall in T over 2-3 days to the even lower levels of < 30 ng/ml."

If I recall correctly, Firmagon gets a greater percentage of men to sustained T 50) than with Lupron. But please research to be sure that is correct. I do know that Firmagon gets you castrate FAST, and that the shot stings like a son-of-a-bitch on the following day.

I would also be confused by the team focus on cryo and sole concern with the prostate itself. I would be more concerned with the mets and the systemic treatment (meaning T as low as possible). That is not to say cryo would not be of benefit.

Just how irrelevant has your prostate become in "spilling" cancer? I dunno. I don't know enough to tell you "don't cryo over spilled mets." (Sorry, I couldn't help myself... they say laughter is the best medicine.)

[MateoBeach]

I agree with T_A and your #2. Go to a different cancer center of excellence without the bias towards cryo. You need full pelvic SRT with boost doses to identified nodes and any other site. Possible SBRT to the nodule in Prostate?

Then add abiraterone +p to the ADT for 18-24 months. A PSMA PET scan may provide more important details about sites of cancer if this has not been recently done. Time to take charge of your treatment and fate. Paul

[oreogon]

Unfortunately every person is different as to there body adjusting to treatment, I had radiation then Lupon, changed to Eligard, as PSA went up got on Zytiga 2 a day, over time all T and PSA , 0 so stoped eligard just zytiga so far so good, your body is different, if unhappy get second opinion, I have, get book Patient guide book on cancer it is free call 800 757 2873 It will help you a lot, all Prostate cancer people should get it

[scottsname]

I would consider getting a galium PSMA PET scan as well, I believe there is an isotope that might even be more current. It helps to have a more accurate picture of what you are facing. I also agree with MB, I would head to a top notch cancer facility. I always worry about the one trick pony kinda places. Depending on where you lives, places like MD Anderson, Sloane Kettering, etc. are worth the trip.

[Birddog2]

was diagnosed with stage 4 prostrate cancer in July 2020. My PSA was 259. I was started on Casodex and Lupron . In October of 2020 I went thru 18 weeks of chemo. It brought my total T to 15 and PSA to 1.4. In March of this year my PSA started to rise 1.8. I have been enrolled in a clinical trial and my PSA now is 0.3 and no side effects. You should have your oncologist check into clinical trials, but lupron is also a key component of my treatment.

[jfoesq in reply to Birddog2]

What clinical trial are you participating in?

[Lewellen]

MO meeting went well 👍

Thanks everyone, that input was just the boost I needed to talk to my MO with confidence.

We're adding Abiraterone +P to my Lupron regimine.

And I have an appointment with my RO on Monday👍. I'll talk more with her about getting the pelvic bed done, AND the lymph mets, AND the node in my previously radiated prostate. ( He's still in there, just shocked into silence and curled up like a hedgehog 🦔).

If she holds the line on Cryo to the prostate first, maybe that's ok. It would be more "thorough".

I'm resistant to it in an attempt to save any nerves around there that may still be functioning. Sigh. Hate to give up more than I have to.

But overall I feel more in the driver's seat. Thank you 🙋.