Recurrence-Considering Casodex (Bicalutamide) Monotherapy although I am high risk

Startech, so sorry to read this. You've been a long time poster here, and as i recall you've been helpful to me early on.
Suckky situation you are in. Everyone chooses their own path to this crappy disease. I think you do the right thing, thinking outside the box, or wanting a Dr who will. There is not enough black and white in this Prostate business, mostly grey.

All i can do is wish you well, and say that i hope you stick around for support, and education when questions come up along your journey.

Your plan of Casodex now, and Lupron only later when it becomes necessary, makes sense to me.

Startech, I fully understand your apprehension towards Lupron, as I am scheduled for Lupron/Zytiga starting in September, and I am dreading it. I approached my MO, who I like and regard highly, with the possibility of Casodex monotherapy. He would have nothing to do with it, and described it as an inferior and irresponsible therapy.

Good luck to you with whatever treatment you choose.

Startech said...
I already feel like I have the mild SE's of HT. Low energy, hot flashes, upset stomach but with appetite, brain fog and some clumsiness... Depression is starting to set in and I just can't think right now. I need to find an MO and may have to give up this roaming life.

The rolling stone gathers no moss, and it sounds like you certainly lived the free and unencumbered lifestyle that many of us "children of the sixties" admired. Hopefully you enjoyed it well. But we all are eventually called to pay for our vices... drinking, smoking, overeating, careless sex. Then suddenly we are no longer young and stuff starts to stick to us.

It appears that your warning signs appeared 3.5-4 years ago, when your PSA went from .03-.1 between 7/14 and 12/15 (from your sig). That was probably the time to strike while the iron was hot. Admittedly that was not a good period in history for many of us. Without details on nodes - which appeared to be clear if you were truly N0, it's hard to say what could have been done back then given your grade 5 primary component. Now guessing it must have been micromets.

What to do now? As you said, looks like it's HT for you. As you had EPE and PNI and were stage 3a, ART could have been offered at the time (I'm guessing) which could have been followed with docetaxel, if they did stuff like that just a few years ago. Might have stopped it then, but where your .03 put you in the zero club, my .03 put me in the adjuvant radiation camp.

The more we learn about this disease the more we realize just how difficult it is to eliminate it.

Thank you all for responding. Prato, I have been following your journey and think you have had plenty of good advice. I of course wish you the best forward and congrats/thanks for becoming a Moderater. I appreciate all of your input and am looking for ideas as the decision has not been made.
I am fully aware that Casodex is not as promising as Lupron, but it appears to me the risk to try it are acceptable. I have not asked my MO about it because I already decided to find an MO with more experience. My new MO must be open minded about new ideas.

Argent, I haven't completely ruled out radiation because of cases like yours. Congratulations for your success! But my research, indicates more failures than successes and that is one of the reasons for this post.

I am polling the members here for their input and asking for Oncologist references.

Jim, did your RO suggest Tamoxifin for breast issues or maybe he just considered the short time of Casodex? Also why Firmagon vs. Lupron? Thanks

Post Edited (Startech) : 8/8/2018 8:35:03 AM (GMT-6)

Startech said...
Jim, did your RO suggest Tamoxifin for breast issues or maybe he just considered the short time of Casodex? Also why Firmagon vs. Lupron? Thanks

He didn't suggest Tamoxifin. But by the time I was beginning to have the symptom I was approaching the end of 90 days. I started Casodex a couple of weeks before starting SRT and finished my 90 day prescription about 2 weeks after finishing SRT.

As for Firmagon vs. Lupron - I'm in the control group of a clinical trial for patients with high-risk PCa who have failed surgery (with or without radiation treatment). The trial has three arms - Firmagon (degeralix) only; Firmagon plus Apalutamide; and Firmagon plus Apalutamide, plus Abiraterone Acetate (Zytiga) with Prednizone. I was randomized into the Firmagon-only arm, which is ok with me, though my hope was to get into the Firmagon plus Apalutamide arm. I really didn't want to be in the tripple-whammy arm with Zytiga also, but if that was what the randomization process (rock-paper-scisors?) decided I'd have taken one for the team.

A plus in favor of Firmagon vs Lupron is it's speed of action. It reduces testosterone, and PSA within a matter of a day or two without the flair that comes for the first few weeks on Lupron. This turned out to be an especially good thing for me - even though not anticipated when I signed up for the trial. In the couple of months between first discussing the trial and starting it, I had a rapid increase PSA. The pre-trial CT scan showed an enlarged lymph node blocking the ureter and flow from one kidney. My primary care doctor insisted I have a temporary stent put in as a precaution to avoid kidney damage, which I reluctantly did. I started Firmagon 4 days after the stent went in and imaging a month later showed the lymph node was no longer enlarged and the blockage was gone. In reality the blockage was probably gone within a day or two of my first Firmagon shot and I probably could have skipped the stent.

The one down side of Firmagon vs Lupron is that it requires monthly shots, not a big deal for me, but I can see why some might want to get stuck only every 3 or 6 months.

Jim

I was on Casodex for a while and asked Myers about Tamoxifen but he was very opposed to it because "It's a known cancer causing drug". So I got man boobs now too. The tenderness subsided but I'm not happy about what I'm carrying around on my chest. He also said the radiation risk to the heart wasn't worth it. I don't know. Maybe I'll have them removed after I'm done with Lupron and Xtandi in October.

Oh, I'm getting along ok for hot flashes after my MO added Megace 40mg once in the morning, to the twice daily dose of Gabapentin. I think it's irresponsible of docs waiting for you to suffer hot flashes. They should start treatment at the same time they give you the first shot.

Rigby said...
I was on Casodex for a while and asked Myers about Tamoxifen but he was very opposed to it because "It's a known cancer causing drug". So I got man boobs now too. The tenderness subsided but I'm not happy about what I'm carrying around on my chest. He also said the radiation risk to the heart wasn't worth it. I don't know. Maybe I'll have them removed after I'm done with Lupron and Xtandi in October.

Oh, I'm getting along ok for hot flashes after my MO added Megace 40mg once in the morning, to the twice daily dose of Gabapentin. I think it's irresponsible of docs waiting for you to suffer hot flashes. They should start treatment at the same time they give you the first shot.

That sounds like exactly the advice I received regarding ADT side effects. My RO was not in favor of breast irradiation. Neither urologist nor RO was in favor of tamoxifen either (can't recall specifically why not). They suggested riding it out to see if anything happened, and if it became bothersome to consider surgical correction.

Knowledgeable people on this forum often recommend either of those treatments to lower the risk of gynecomastia. There seems to be a range of opinion about it. I listened to my doctors.

Oddly enough, during the 3 years on ADT2 I had no issues with breast growth whatsoever. Nothing. But when I quit it, about 3 months later my breasts became quite tender, sensitive to pressure. I got some growth during another 3 months or so as my body adjusted to my resurgent testosterone. (Apparently, perversely, excess testosterone gets converted to estrogen). Sensitivity went away, and the modest amount of growth that occurred isn't bothersome. I've never had a beach-body anyway, and at my age who cares!?

I took Megace twice daily, 20 mg morning and evening. It helped a LOT with hot flashes.

Startech:

Although my pathology is quite different than yours, I did have one positive lymph node after RP, and after a "no further treatment" recommendation from my Uro at the time, I experienced a recurrence almost four years later. To treat my recurrence, my MO recommended 6 months of Lupron, and/or SRT to the prostate bed only, presumably because of my slow PSADT and relatively low PSA at the time. I wanted no part of Lupron after reading about the SE's. However, I knew I wanted SRT. I decided to get second opinions on ADT and SRT from some very well known MO's and RO's here in the L.A. area before proceeding.

Long story short, one of the RO's I consulted with was Howard Sandler at Cedars Sinai who, although unknown to me at the time, is one of the best PC RO's on the planet, and a co-author of the RTOG 9601 study comparing SRT and ADT with Casodex and SRT and no ADT. After considering my aversion to Lupron, he recommended four months of Casodex and Avodart along with whole pelvic SRT because of the original positive lymph node. Although my PSA at the time was below his personal threshold for no ADT, he probably figured some ADT was better than none in my case. I followed his advice and today, almost one year after the SRT and eight months after the ADT, on which I stayed for six months, my PSA continues to be undetectable.

You just might be a candidate for SRT and definitely some sort of ADT. However, I would seriously consider whole pelvic SRT to hopefully reach those positive lymph nodes. You probably will not find any MO's, or RO's for that matter, that will agree on the Casodex monotherapy. However, Casodex was widely used before Lupron came along, and there is some evidence (RTOG 9601) that it can be beneficial with SRT. It is ultimately your choice.

Best of luck in your journey.

Rick

Redwing,
I think you're right. Still, who am I to argue with another "giant" in the PCa world?
Jim

Startech:

I was one of the lucky ones as far as the SE's from SRT. I had none other than fatigue the last week or so of my 37 treatments. I had to drag myself to the last five or six sessions. However, about a week or so after I was finished, the fatigue subsided. I have had no other SE's thus far.

Good luck and keep us posted on your progress.

Rick