Yesterday my guy saw his new oncologist, who outlined the options he could follow now that he is 6 months past the two years followed in the STAMPEDE trial. Based on a long time PSA of 0, the oncologist thought it was possible the cancer has been eradicated and my guy cured. We were both stunned, and my guy has elected to stop the lupron and Zytiga, especially in light of severe emotional and cognitive side effects (and some neurological) the entire journey. Part of his decision includes the possibility that even if he is only in remission, continuing treatment indefinitely at this point might push remaining cancer cells to find a work-around and become harder to treat in the future. The oncologist expects if this is just a remission, if the PSA starts to rise in the future, at that point the same treatments should work again since there is no resistance at this point.
I want to thank everyone on this forum for their support because the past 3 months has been brutal, more for me than for my guy, as I weathered the disruptions due to the emotional and cognitive side effects and simultaneously managed a difficult situation to get my guy to agree to talk with both his local MO and to consult with an excellent prostate cancer specialist when my guy was not being either sane or rational on a consistent basis. Luckily, his local MO dropped the dosage of his Zytiga from 1000 mg to 750 mg 2 weeks before yesterday's appointment, and my guy was in a far far better mental state than he had been in for some time, so yesterday was productive and smooth.
Now we will see. My guy NEVER expected an oncologist to utter the CURE word, even though in a one-off consult Sartor at Tulane (he's BRCA2) had told him before he started on this journey that it remained a possibility.
Today is a very new day.
Take care.........
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lss65
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I support your decision - taking care of the person is every bit as important as taking care of the patient. Emotional justification is every bit as valid as oncological justification.
I would only quibble with some of the logic behind the oncological justification. You wrote: "Part of his decision includes the possibility that even if he is only in remission, continuing treatment indefinitely at this point might push remaining cancer cells to find a work-around and become harder to treat in the future." In fact, the opposite is what happens. Some patients think they can delay the transition to castration-resistance by eliminating or reducing the amount of ADT used. Castration resistance is a consequence of genomic breakdown that always occurs as the cancer evolves. It may be facilitated by eliminating the most vulnerable hormone-sensitive cells and leaving only less hormone-sensitive cells (this is called "competitive release"). We are learning that cancer cells signal other cancer cells via extracellular vesicles to become like them. Even if it does not cure the patient, the profound reduction of the cancer load has a bigger effect on delaying the emergence of castration resistance than the counter effect of drug resistance.
I hope his testosterone recovers quickly and he gets a good vacation.
I thought he was castrate resistant already, but can't tell from the medical notes. any idea how I would determine that?
however, I do feel that given that the emotional/cognitive situation has been so difficult, he needed to do something to take the pressure off every day life - it simply had become unmanageable. if this is a vacation, it is well worth it, and then if he goes back on lupron, or other ADT hopefully it would be at a more steady state level, like 1 month shots, and if he goes back on abiraterone that he can use 250 mg with proper fat level. I hadn't known him at the beginning of the lupron/abiraterone, but the emotional, cognitive problems were far more extensive early on. At the least, if being on vacation gives him time to recuperate and evaluate his situation more dispassionately and in a healthy manner, he could create with his doctor a far more optimal treatment protocol going forward.
I see your point about the cell growth. I'll raise those concerns with my guy just so he has all points of view before him.
Might want to try Orgovyx. Taken every day gives you more control. If side effects become to much he could stop taking it for a few days. I did Lupron for7 months in combination with 1000 mg of zyteiga daily for about six or 7 weeks until I couldn't take the emotional side effects. Now I take Orgovyx and 250 mg of zyteiga daily and I am able to tolerate the side effects much better.Ron
I am currently taking Firmagon and 250 of Zytiga with breakfast. I wanted to go to Orgovyx and abi, but MO and insurance would not allow it since there have been no tests with Orgovyx and abi. Tests now ongoing, and will be done in Dec. 2021. How did you get permission to do Orgovyx and 250 mg abi? Is insurance covering it? I think the Orgovyx will be more costly than Firmagon, since insurance co does not have a copay for Firmagon. My abi copay is $85, and I bet Orgovyx copay would be at least that much.
Congratulations on this progress. Great to learn that just a 25% reduction in abiraterone cleared the emotionalAnd cognitive issues substantially. You both are on a good track now! Live your best lives. 🙏🏻
I guess I would be a bit reluctant to say cured until he is over 2 years off the Luprin. From what you say, he's still on it?I had cyberknife radiation a month ago, after being off Luprin for a year and had the new Axumin PET scan that found a lymph node that was local. I go in Monday to see if my PSA is affected as in at least holding or going down to zero. We're hoping this is what has been driving my PSA up during this holiday luprin holiday. I have huge brain fog and more on Luprin as well, and had to retire from work.
I think the oncologist is hopeful for a cure bc his PSA level has been at <.02 for over 2 years, but I know it is a long shot. He is just about to go off the lupron, and the doc says it will take a year to get above castration level. I completely empathize with your needing to retire - my guy has been retired and working in a local job during his retirement, and because it is a job mostly requiring tasks and not heavy intellectual heft, he's been able to manage it. He has had the horrible brain fog, memory loss, inability to think about anything complex during the times the lupron has been heaviest in his system (doing 3 or 4 month shots), and emotionally fragmented. At a lower level in the lupron cycle, and having decreased abiraterone to 750 mg, he's far along toward "normal", coherent emotionally and cognitively, and just starting to be able to be self-reflective and remember everything that has happened to him during the entire course of treatment, and especially most recently the past few months. As he says, I'm starting to become sane again.
If there isn't a cure, I am now confident that my guy will be in his right mind and able to work with his doc to configure a good enough solution, maybe Orgyvyx plus 250 mg abi with food, so he isn't mentally decimated. My biggest worry had been he wasn't going to be in a right state of mind, would refuse to let me go to the doc appointment with him, and nothing useful would get done. Thank god he was able to get across to his local MO all the neurological effects when he went in on his own (I had prepared him to be able to discuss these) and she lowered the abi to a point that helped him so much he could talk with his new doc about the emotional and cognitive effects himself, and then I could chime in. I staged this out figuring there was no way he'd discuss the mental stuff with the local MO (he was refusing to let me go to that appt two weeks ago) given where he was, but since he had just had a seizure, which he had never had before, that he might be able to get THAT across.
The entire situation was impossible and one it will take me some time to recover from - luckily I got myself a therapist and I can work this through with her and not burden him because he has his own stuff to contend with. If I hadn't had many years of experience dealing with the medical system in crisis situations because of my teenage son's long, difficult chronic illness (he's doing well now, always better and better), I never could have gotten my guy through this......
he has used lupron and abiraterone/prednisone and had salvage XRT to prostate bed with boost. prior to that he had a prostatectomy, Gleason 4+5, negative margins. But his PSA kept rising, and they found 2 local mets on a PSMA scan. One thing unusual is he jockeyed the system so he got the salvage XRT at the exact same time he started the lupron and abi/pred, which may have been one reason for the severity of his side effects, but he was so freaked out at the time he didn't want to wait to do everything sequentially with how fast his pSA was rising.
Hi iss. I hope for the best for your guy. As a point of reference with Sartor. I see him too and think the world of him and his colleagues. I’m 4.5 years out and still responding well to Zytiga, Lupron, and prednisone. Sartor is careful with his words so that is interesting. “Uncharted territory” rather than cure is the term he’s used with me for folks where there’s little longitudinal data to compare. And I’m grateful to be here! For me, I’ve had no mental side effects and, other than bone loss (and libido obviously), don’t have any major side effects so no vacation for me is their tailored recommendation for me. Sounds like you’re in a good place! I hope you have many more years with your guy! ✌️ DougNOLA
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