Hello All , Im stage 4 oligiometatastic , 1 lymph node . I had primary SBRT in 2016 , my PSA hovered in the 1s for 5yrs . On 07/13/21 was my last psa was 1.7 . My PSA rose to 4.19 on 12/08 ( RED FLAG ) on Dec. 9th I was Given a PSMA-Pet Pylarify at V.A. and the 1 node lit up . Given ADT , Eligard, on Dec. 10 ( 6 month) , and on 1/18, 3 fractions of SBRT to lymph node. On 1/31 PSA was ( .4 ) I started IMRT , Tomotherapy on 02/01 and have 18 fractions completed as of today out of 25 . On 02/17 , PSA is at .22 and testerone is <7 . I also started on 02/01 Zytiga , ( 1 - 250mg on a light breakfast and 1- 5mg prednisone ) . I have V.A. and the Univ. of Chicago as providers . My side effects are nill . A little fatigue in the evening . If I can have this as a long remission as time goes by I would take it . Has anyone here stayed the course with adt , zytiga, pred for a long remission , or should I be waiting for the other shoe to drop ? Thanks JJ
Any long remissions on ADT , Abi , pr... - Advanced Prostate...
Any long remissions on ADT , Abi , pred ?
I think for one lymph node met on a PSMA PET/CT which is already radiated, ADT+Zytiga is already more than you need. If you have no side effects you can continue and expect this to last for a long time. I personally would just take 150 mg Bicalutamide and keep the PSA value low this way.
I was on zytiga and prednisone for 3 /12 years before it started to fail. Good Luck.
You are going for a cure. Hopefully, you will get it.
Thanks Tall One , I needed that . SemperFi , JJ
Hello , I was told the SOC at V.A. was 4 pills , fasting . My Original script was from U of C from Dr. Szmulewitz , for 1 pill on a light breakfast with 1-- 5mg of prednisone . I talked to V.A. MO , and we talked about the studies . So she agreed to 1 pill . And so far all my lab work is all good. Yes I get the drugs from VA . as I have a 100% rating for service connected injuries . I have medicare , BCBS of Illinois supplement . I hope this all works out in the end .
Agree..shot at longer-term cure , or at least long-term control !! Hoping for you!!
BTW, because you indicate you will now be receiving whole pelvic RT, is it correct that you did not receive pelvic RT during your initial SBRT......what was your Gleason? Did you undergo ADT concurrent with original SBRT?
I did not receive whole pelvic radiation with only primary SBRT to the prostate . Did not receive ADT with primary SBRT . My Gleason score was 4+3 but I sent those slides to John Hopkins and they downgraded to 3+4 . So here I am receiving SBRT to the Lymph node and 25 fractions to the whole pelvic area . I wonder why they dont do whole pelvic radiation at time of primary SBRT just to cover all the bases ? Thanks JJ
whole pelvic not SOC for 3+4, nor is ADT. Both because negatives SEs and low risk of metastasis for 3+4...but 4+3 perhaps are done...not sure. Were many cores positive? Or just 1?
I had 3+4 and whole pelvic and it was SOC. My PSA was 156 and there was evidence of LN involvement on CT Scan. So maybe not SOC for certain circumstances but not all.
Bicalutamide monotherapy is mainly used in Scandinavia. In Germany you will usually get a Lupron injection. However, if you ask for Bicalutamide and point out that the guidelines allow for 150 mg Bicalutamide monotherapy, you can use Bicalutamide. Still, Bicalutamide is mainly used in the dose of 50 mg two weeks before the first Lupron injection.
Here is a link to the European guidelines mentioning the monotherapy with 150 mg Bicalutamide. uroweb.org/guideline/prosta...
The trials with Bicalutamide were done while Casodex was not available as a generic drug and therefore a drug company could finance the trials.
The following trial mentions that 50 mg is not as effective as castration and therefore future trials should be made with 150 mg. pubmed.ncbi.nlm.nih.gov/873...
Here are studies with 150 mg Bicalutamide
pubmed.ncbi.nlm.nih.gov/183...
karger.com/Article/Abstract...
pubmed.ncbi.nlm.nih.gov/124...
I take Bicalutamide because it does not decrease the testosterone and estrogen levels. Therefore I have no hot flushes, keep my muscle strength and the bone mineral density is not reduced. I take it with tamoxifen to avoid gynecomastia. I will take it as long as it works and then continue with e.g. Degarelix.
Currently, I take a 50mg Bicalutamide pill per week in two installments (25 +25 mg). My T is 2000 plus from 1100-1200 before start taking it and when I reduced Tamoxifen 10g to 4 days per week my breasts became sensitive. In my case this dose seems to achieve my target for a PSA around 0.05. I have read the Darwinian viewpoint and found it reasonable, i.e. eliminate not all hormone sensitive cells as this paves the path to the evolution of their insensitive counterparts.
I note that a brief reference to 150 mg daily of bicalutamide MIGHT be an option.
You'd have to TEST that protocol to see if it works for you. AND find a willing practitioner.
Note that I am Canadian, but Bicalutamide at 150 mg daily, is NOT the SOC - I had to fight for it.
I use it as a monotherapy and have been undetectable for about 6 months now - from a HI of 11+ after a BCR. The timeline has been about 15+ months in total, so this is still relatively early to draw any conclusions, but my medical support team are very pleased and believe this could last for much longer - it's anybody's guess - but I did enough research to CONVINCE my oncologists to give me a chance to try it. I had a MISERABLE time on 'Lupron' / (Eligard) and desperately wanted to avoid repeating that again at all costs.
At Dx , about 5 3/4 years ago, I was T3b, N1, G9 and underwent ADT and External Radiation (79 Gy). I had a BCR with numerous scans along the way, including a PSMA/PET just before I started the BICA. I'll be 70 this summer.
The scans at THAT (at BCR) time showed SIGNIFICANT widespread activity in the torso (lymph nodes) area and one bone met (L5).
THIS week I'm scheduled for a bone scan and CRT - the good news - the last scans (6 months ago) showed a reduction in 'visible' cancerous activity.
My bloodwork is pretty good and stable (low CBC stands out as only negative). I get the 'works' every 3 months to monitor the important stuff.
I suspect (hope) the trend will continue.
Wishing you the best on your journey .....
Hello. Some similarities in our situations. Dx 12/2014 t3b n0 g9 (4+5). Went on Bicalutamide 150mg right away. Ext radiation 37 fractions 74gy followed. BICAL holiday 2017, 18 months later PSA rising. Oligo tumour eliminated w SABR. Continued BICAL till it began to fail 2021. Now on Zyt, Prednisolone, Zoladex. Looking back BICAL did its job, side effects tolerable. Now have mets to deal with. Good luck.
My PSA has been at 0.008 for about 6 years. Been on Zytiga, Prednisone and Trelstar injections ( twice a year). Urologist started me off on Calcium and D vitamins. Pray a lot to.
Nal,Some years back I had a lady Onco who I think was brilliant.. She knew what was going on all over the world & said I was a good candidate for Casodex Monotherapy. She put me on 150 mg a day & it kept my PSA down for 6 1/2 years.. Not much SE except man boobs.. I was sure sorry to see her leave my area.. She moved to Nashville and is a cancer researcher/instructor at Vanderbilt U. Good for her.. My present MO after discussing things with him said they wouldn't have considered that because its not a SOC.. So I feel I got a bonus 6 1/2 years out of that.. Now I'm on Zytiga & Prednisone & doing ok.. Hoping for the best..
I had an IRE in 2015. Gleason 8. There was a positive article in the press and I decided to get that treatment. Since then I had intermittent ADT, long breaks because I removed mets with Cyberknife and Lu177. Currently I am using Bicalutamide as an adjuvant systemic therapy after the last Lu177 cycle which was about six months ago.
I think a good plan could be intermittent ADT plus zapping mets and using Bicalutamide during the breaks. If you destroy mets with RT you may not need a third drug. Maybe estrogen patches could be the third drug in your adaptive schedule.
Hi reconjj, Just curious which VA gave you the PET Pylarify?
The PSMA-PET- Pylarify was done at Hines V.A. Maywood Illinois as well as the ADT , Eligard , 6 month shot . I continue to consult with V.A. and U of C to keep an eye on the beast .
We are in Europe (Slovenia). My father (4+3) was started on Bicalutamide - as mono they started him on 150mg, when PSA dropped he was on 50mg untill it started to rise, than he was switched to Eligard. My father had serious problems on 150mg (big fluctuations in blood pressure, suspected TIA), while he tolerated 50mg much better.
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