18 Month Update : Brief Summary Gleason... - Advanced Prostate...

Advanced Prostate Cancer

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18 Month Update

TylexGP profile image
7 Replies

Brief Summary Gleason 4+5 with Intraductal histology T3b n1 Brca2. After 18 months of ADT plus Abiraterone and HDR Brachytherapy and EBRT my WBC is within normal limits for the first time since HDR Brachytherapy. My PSA started at 10.28 and decreased 95% the first month of ADT and slowly after that with the last 6 months ranging 0.06 to 0.08. Still hoping PSA will go lower. Ultra sensitive Bone Scan and CT remain clean post radiation.

Always looking at the what ifs and next therapy or clinical trials. Thoughts of things to continue to keep an eye out for in clinical trials. Thank you all for your posts and sharing your journey.

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TylexGP
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Adendino profile image
Adendino

Thanks for the update and the good news!! Did you have seminal vesicle invasion and extra capsular extension?

TylexGP profile image
TylexGP in reply toAdendino

Yes I had seminal vesicle invasion, ECE and peri neural invasion (PNI). The ADT sucks at times but overall I feel good and remain active.

Adendino profile image
Adendino in reply toTylexGP

Thanks. My husband has an almost identical dx. PSA= 12, GL 9 (4+5) with all cores positive and intraductal carcinoma noted. SVI and ECE and PNI, BUT thankfully, PSMA pet scan shows no spread. He's just started the 3 month shots of Lupron + Abiraterone/Pred (planning on 2 yrs of the ADT), and will embark on ERRT radiation starting in January. Multiple RO's reviewed his case and they don't want to do HDR, but I'm not sure I really understand why. We are at UChealth in Denver CO so it's an established cancer center. I was reading a lot about HDR and I was hoping he'd get this too, but apparently not. He's 62 and fit/slim/active/cyclist.

timotur profile image
timotur in reply toAdendino

Why not HDR-BT? Sometimes if the prostate is too big there are geometry issues with placement. I would investigate it at another cancer center-- UCLA with Dr Chang, if you can get to LA. There's several good outcomes with HDR-BT on this site for t3bN1M0 + SV.

Qiviut profile image
Qiviut

Had a similar diagnosis 18 months ago. Treatment included only 12 months of Zolodex (Lupron equivalent), HDR and BT. PSA has fallen similarly to 0.05 but I have been advised to expect a PSA rebound. Have been told outcomes with 12 months ADT indistinguishable from 18 mos looking 5 years out. I am 72 years old.

TylexGP profile image
TylexGP in reply toQiviut

Thank you, I have been advised the same to expect PSA to increase when I come off ADT.

bluesnjazz profile image
bluesnjazz

Hello, TylaexGP. I also discovered PCa at 57 with a PSA reading of about 6, Gleason score of about 5, cancer cells in only one quarter of the prostate, no sign of tumors. This was in 2015. Because is was so early, I did abundant research on both the current medical treatments as well as alternative and complimentary treatments. Based on this, I tried for a year to defeat it with a major change in diet plus vitamins and supplements that had been shown in clinical studies and controlled experiments to help slow PSa and C-cell growth and saw my PSA drop during the following year but then climb only slightly to nearly 7. I got scare with that tiny increase and decided to do brachy a year later. Within 3 years, my PSA had all but disappeared, so I forgot about it and went on living normally.

Then came 2014, 9 years after brachy, when I suddenly discovered a PSA count over 7 with no sign of C-cells in the prostate. Metastasis, it seemed, but since scans showed no signs of anything amiss within plus my doubts that it could metastasize after being discovered and treated (cured, it seemed) so early, I refused any treatment other than a restrictive diet and more vitamins/supplements for a year and a half. For the first half of that, PSA growth was so slow I thought my plan could hold it off indefinitely. However, about a year after the apparent metastasis was discovered, the PSA started exploding--to 20, to 30+, finally to 45 at which time a scan showed a tumor in a lymph gland near my spine, so I gave in to double ADT--Lupron and Casodex. My PSA immediately started dropping exponentially, down every month 80-90%, ending at essentially zero at six months. I stopped it then, suffering immensely from the horrid side-effects--particularly the debilitating hot flashes.

After that it was a year before my PSA climbed out of the normal range again but I refused double ADT again, instead taking Casodex intermittently until PSA hit near zero again--usually no more than 2-3 weeks. I even experimented with regimes of every other day and even every 3rd day, all of which did the job for about 3 more years, when Casodex no longer worked. Thereafter, I started on degarelix--an antagonist, easier on the heart than Lupron--and agonist. While the injections in the belly cause horrible swelling and pain for a week or two, I am now down to doing it only once or twice a year yet keeping my PSA under control (the last one, in September, 2022, was only a little over 4). Also, I have scans annually, and nothing has yet shown up in them. This all means I've had C-cells within for about 18 years, the last half of those metastasized, yet my off-and-on hormone treatment combined with diet, vitamins and supplements, and regular vigorous exercise has kept me tumor-free except for that one discovered 7 years ago next month.

Sorry to be so windy, but I hope this gives you some sense of possibilities. I'd be happy to answer specific questions you may have.

Best regards.

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