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Another 8+ years G9 update

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Prostate Cancer
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Posted 3/12/2021 8:48 PM (GMT 0)
I'm encouraged by Gunner's post to provide mine as well. My path is a mere speed bump compared to his, but I know these stories helped me 8 1/2 years ago.

My signature has most of the back history ...G9, Lupron, Radiation multiple times, Zytiga, Immunotherapy, Chemotherapy, etc.

In 2018 I had my last bunch of scans; a PSMA scan at UCLA showed that I had a number of minor spots growing on my rib cage, spine, and shoulder. Before that, we'd just radiated spots that we found. But my PSA was up to 36 again and there were too many. I agreed to go back on the Lupron-Zytiga combo which I'd been on and responded to before, while we looked at other longer term treatments in the pipeline. I thought about Radium-233 but I didn't like my PSA climbing (doubling every 5 weeks).

So with me in ADT and both my wife and I working, our COVID lockdown passed relatively easily -- my low energy, night sweats, and fogginess being the rough spots. Unlike Gunner I take many pills to keep going--uppers and happy pills. But now, in 2021 it seems that the LATITUDE protocol of Lupron+Zytiga is weakening. My PSA has been rising and is now 1.2, doubling every 5 weeks.

My doctor and I are looking at 3 different clinical trials/treatments for the next step. We'd discovered a "ATM" gene mutation in a circulating tumor genetic test. And we knew that my cancer shows up brightly on PSMA scans. So I'm researching these right now:

1. Ceralasertib, an ATR inhibitor to address the ATM mutation. There's a study opening up trying it as a monotherapy. https://www.clinicaltrials.gov/ct2/show/NCT04564027
2. Onvansertib, a PLK1 inhibitor that was developed at MIT and is in trials at DanaFarber here in Boston. https://www.clinicaltrials.gov/ct2/show/NCT03414034
3. Lu-177 . Getting into one of the Phase 2 or Phase 3 studies of Lutetium to target the cancer with a radioligand. Such as: https://www.clinicaltrials.gov/ct2/show/NCT03490838

I'm looking to find targeted ways to keep bobbing and weaving in my cancer fight, buying time where I can and taking calculated risks when in my favor. (input or experience with this appreciated)

And I've got some pliers and a blow torch in the garage in case it comes to that. Stay strong ... keep asking questions and looking for solutions. It's never as simple as the first doctor tells you, ime.

SteelGuy
Posted 3/12/2021 10:27 PM (GMT 0)
I am a fellow G9 and been under 6-month Lupron for a year now with another year still to go. My PSA was up to 18 in February 2020 before doing Brachytherapy in April 2020. I say 18, but the RO told me I was actually 36 because finasteride had masked my true PSA score. That knocked my socks off at the time and worried me. My most recent PSA reading was 0.10 so my ADT is working. I just want you to know I feel for your situation now and all the choices you now to make. I am personally inspired that you have had 8.5 years with the help of ADT and I wish you well in your clinical trails knowing that a lot of great technology has been developed over the past 8.5 years and you may benefit greatly under it. Keep us informed as like I said your an inspiration to all of us G9ers. God bless!
Posted 3/13/2021 6:46 AM (GMT 0)
Thanks for updating SteelGuy. I hope life is treating you well. Happy to see your update as well. It’s important for guys just getting started with a rough diagnosis that they find our stories and know that there’s a path for them.
Posted 3/14/2021 1:05 AM (GMT 0)

Hello, SteelGuy ~~~

We've got commonalities and similar chapters in our treatment history ----
chemotherapy, ZYTIGA, and radiation.

I'm in my 8th year of survivorship, and I don't take that for granted.

I agree wholeheartedly with you --- new readers need to read actual stories of long-term survival, when they are first diagnosed.

I remember when I was first diagnosed. The doctor wasn't smiling that day, as he shared those first test results and scan results.

He stated that the cancer had stealthily infiltrated both of my lungs already, and that time was of the essence in getting treatments started. He then quietly stated I had just become his youngest prostate cancer patient.

Nothing had prepared me for that moment.

I quietly remember thinking, "Will I even make it to Christmas this year?"

Finding this website was a STEP FORWARD --- reading and sharing experiences, finding support, hearing words of encouragement --- and finding CAMARADERIE here.

The sharing of one's stories and treatment experiences is the hallmark of this forum ---- and we have readers from 'round the globe ---- and new readers who dig back into the archives of past threads, finding important threads that encourage them, when they need it the very most.

Every fellow here has endured a challenge, at one time or another, in their prostate cancer journey -- an unexpected diagnosis, recovery from surgery, a series of radiation treatments, or an arduous round of chemotherapy infusions.

In recent weeks, it's been tremendous to see new posts here from new members.

If you've never posted before, consider this your invitation to do so!

Each new voice here leads to the collective fellowship that abounds here --- past AND present!

Thankful to read of your long-term treatment success, SteelGuy!

Like a lighthouse BEACON ---keep shining the light ---- your story will encourage others!

Comradeship and fellowship ~~~
CYCLONE ~ # Iowa State University
Posted 3/18/2021 1:21 AM (GMT 0)
Wow, what a bonus tonight! Gunner, AND Steelguy? Wow!

It's great to hear from you, especially since it's been so long since a GFMPH event was last held. I really miss seeing everyone. I'm hoping your efforts at further treatments provide some control over this beast. It never rests, does it?

Steelguy, you are probably the other primary inspiration I had early on. I've quoted your "blow torch and pliers" approach countless times! You and Gunner are a couple big reasons I was encouraged to throw everything available at my case (including whole-pelvic radiation due to my estimated 40% risk of involved lymph nodes).

All the best, my fellow warrior!
Posted 3/22/2021 4:13 PM (GMT 0)
Steel Guy (and others), thanks very much for your post(s). I am scheduled to get a PSMA scan in May at UCLA for BCR prostate cancer.

For those who have already had the PSMA scan: Did you work with any radiologists who have developed pinpoint radiation treatments for the tiny lesions often found by the PSMA scan but missed by other, less precise scans?

I ask because the first PSMA scan I had -- at MSK -- identified a tiny lesion in the prostate bed that was missed by all the radiologists who read the scan except one. And he does not specialize in radiation, but immunotherapy and cryotherapy, treatment protocols that are broader than pinpoint radiation.

I hope I have stated the question clearly enough, and thanks in advance for any comments or information you have.
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