Quick history: 2019 PSA of 20, a few probable spinal mets, bicalutamide monotherapy mid-2020 for six months failed early-2021 after PSA dropped to 3.8.
Tried to initiate ADT via tE2 with estrogen patches in Spring 2021, but could not get T to castrate levels, stubbornly above 150 even at higher doses. ALP suddenly soared to over 1000, PSA to 150.
Started ADT at the end of July 2021, added abi+pred in Oct. '21, PSA down to 4.0 by Jan. 2022 but sharp PSA rise to 7.7, then 8.5 (today), in Feb 2022. ALP still trending down at 250. Castrate at T <3.
Plan was to add chemo, but ADT/Zytiga failure after six months was not in the plan. Damn. First order of business is start to lose the 25 pounds I gained since October and get back to a clean calorie-restricted diet (and practice what I preach). Next?
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noahware
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No local treatment, as PSA of 20 suggested scans, which indicated mets. It was said (and generally continues to be) that metastatic disease requires systemic treatment only, although it now seems many (including me) are rethinking that.
Also perhaps I read a bit too much from the likes of Anthony Horan, Peter Whelan, Bob Liebowitz and others who have long supposed PC is basically an intrinsically metastatic disease, and typically starts seeding the bones long before the tumor is clinically significant. Such a supposition casts doubt on the importance of surgery and/or radiation.
I did undertake a radical dietary change upon diagnosis, and showed a PSA drop from 20 to 13 over several months with no medical intervention (with weight dropping from 190 to about 150, and ALP down to 37). Alas, not only did I not sustain those dietary changes, I ended up totally reversing course and running (now limping) flabbily in the wrong direction. My bad.
My PSA dropped from 156 July 2019 to 95 Sept 2019 by the time I got through my urologist to my MO. A month later it bounced back up to 110. All before the start of ADT. That was Oct 2019. By Dec 2019 it was .8 after 2 months of Lupron and 1 of Zytig/Pred. I had hopes the drop on its own might mean something of course none of the Dr's I saw did. I am also Gleason 7, 3+4.
Yes, Zytiga didn't last long. And they say for most men that if it fails quickly then following it with Xtandi (or vice versa) may also fail rather quickly. But since I got into a Lu177 trial, I didn't go that road.
So next may be what TA suggested at the top of the page: "Xofigo+Provenge+docetaxel may be a good combination."
But since i don't haver nay bone pain from my mets, I may just wait until pain arrives before starting that combo, as it sounds like the side effects may be brutal. in the meantime, I hope to try high-testosterone therapy -- but very hard to find a doc to get on board with that, outside of a trial (which are mostly at Johns Hopkins in MD).
I'm sorry to read this post of yours. I'm hoping you have it your mind and very near future to finally hit your pca hard. I certainly would NOT wait until I lost 25lbs. You'll probably do that any way on chemo.
I thought so lol!My poor brain couldn't come up with a way to ask you so I just decided to write my comment and send it out into digital space and see what happens ha.
I thought I would hear from you that it was a typo!
Will be looking into Lu trials in the US. The only focal therapy I have really considered is cryo, but yes, some debulking may be in order. None done yet.
My MO was in no rush to see genetic testing results, but yes, that tune has also just changed for me! (I am merely guessing at this point, but I suspect I might have estrogen-sensitive prostate cancer.)
Mostly because of the explosion in PSA and ALP when I was attempting the estrogen therapy. It just seemed odd that the 3+4 PC that had been just sitting there for a few years, with a normal or slightly elevated ALP (as low as 37), would suddenly shoot way over 1000 with a few months (the exact few months I shot my E2 levels to the moon).
I was reminded of something Richard W had said a while back, when remembering a discussion with his then-new oncologist. He mentioned to the MO that he was still worried about the estrogen therapy, because well, what if he had estrogen-sensitive PC. The MO said something to this effect: oh, don't worry about that... if you did, you'd already be dead!
Interesting. It's also possible the biopsy you had missed more aggressive cancer. I knew post RP exactly what I had because my entire prostate was analysed. Lots of additional details on my G8 and G9 pca than what was on the needle biopsy report. Is the Lu treatments best for bone mets? I thought that was better for visceral mets.
Wow Bro, your battle with this shit has my head spinning! I really don't know enough about PCa to add anything valid to everything that has already been said. You obviously are a very knowledgable person who has his act together! I guess my chronology is rather simple at this point in time compared to yours.
Thank you for your input pertaining to my posts.
All I can say is that I sincerely wish you success with whatever direction/s you choose.
Thanks my friend! Not sure I have my act together, and sometime a lot of knowledge is a liability as much as a benefit, but appreciate the kind words. My MO does not seem overly worried just yet, as I have a few promising trials and other options open to me and am still asymptomatic and in fairly good health (except for this winter's new improved beer-belly, which is already down about ten pounds in two weeks). Or else he's just putting on a good face but that works for me, too, for now.
The big concern is, when the first few therapies fail rather quickly, it is not uncommon for the next few to do the same. But when first diagnosed at PSA 20, my extensive reading led me to soon conclude I was very probably metastatic and ultimately uncurable. So I already put in a LOT of time coming to terms with a potential death sentence.
I'm not too worried about the "being dead" part, or about it coming a bit sooner or a bit later on the calendar. (I let my wife and kids know in the kindest way I could, hey, it's gonna be YOUR problem, not mine, and it's a problem that you can hope to put off but can never avoid... other than by beating me to the finish line first.) I mean, BEING dead is the current state of quite a few million people over the past many thousands of years, and so far as I can tell they are all handling it quite well, so I expect I will, too. No, it's the details and duration of the actual "GETTING dead" process that worries me most!
I actually did call... he is retired but sounds like he still takes on patients if they write checks with enough zeroes. I believe he started a TRT place many years ago, but of course those places (including his) won't touch PC patients with a ten-foot pole. Too much liability still.
I think I have a uro lined up who will try BAT, but he need the approval of my treating MO (who himself will not do BAT). That conversation is coming soon.
Yes, extensive bone mets... but no bone pain. The met burden is less of a problem for him than the fact that the institution -- Dana Farber -- will not do BAT, period, as it is still "experimental" and well outside established SOC. They would only do it within a clinical trial. (And a little birdie told me they are actually considering doing a BAT trial, but no idea on the truth to that, or the timing.)
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