Hello all this is my first post, and I am glad to have this forum. My PCa backstory:
DX 5/22 Metastatic to bones, PSMA- PET- PSA 30.
Lupron+ Zytiga+ Prednisone 6/22
Change to Orgovyx 9/22
LU177 2x- 10 GBq - 7/22 and 9/22
PSA .240 - 10/22
PSMA PET - 10/22- several spots of increased SUV uptake, some resolution of old spots
I just received results of disease progression despite just a few months. Most old spots are stable, with a few resolved through therapy, But disconcerting that now I have a T8 that was 2.4 SUV in May at 14 now.
My germline testing showed nothing actionable. Have not had somatic testing on tumor yet.
My questions for my MO on Wednesday, this obviously makes me castrate resistant.- What next- Chemo, Provenge and in what order? Is a bone biopsy helpful? My nuclear medicine doctor also offered Ac225 or proton therapy to the bone or prostate gland.
Feeling really desperate unfortunately….
Any insight would be greatly appreciated so I can go in with my best questions this Wednesday.
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Steel67
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Your PSA went from 30.0 to 0.24 over five months, but what are the other PSA data points in between?
I am not exactly sure what the significance is of the increased SUV of your T8 met is. I am totally ignorant of the implications here. How are you interpreting what the ramifications mean? Has your nuke doc given you direction here?
My Lu177 therapy has been within a clinical trial and I am totally in the dark about the supposed "stability" of my disease. Like you I have seen some mets resolve while other areas show new uptake, but this is only with bone scans, no PSMA-PET to monitor progression or see changes in SUV values.
I am starting to think the norm with Lu-177 is that many guys see "one-step-forward, one-step-backward" results, both in scans and blood work. I think I deluded myself into thinking it somehow might be "curative" when it is probably just another weapon in the arsenal that is realistically geared towards stalling, not curing.
For myself, I would avoid Ac225 for as long as possible... the thought of losing salivary function is just too scary to me.
So unless there is a new definition based on SUV values, it would seem under the standard definition you are not necessarily "castrate resistant." ADT + Zytiga dropped your PSA to a pretty good nadir, where you remain. Early on in treatment I would assume that most men have at least SOME cancer cells that can survive and thrive even in the absence of T... if that wasn't the case, wouldn't ADT be a curative therapy?
Interestingly, as my PSA continues to steadily rise with each Lu177 treatment (after dropping with the first) and I show mixed results on bone scans, I have been deemed by my doc and by those running the trial to have "stable disease." The radiographic evidence of progression does not seem pronounced enough to say I am "progresssing" under the trial protocols -- even though it seems clear to me that I am.
In other words, the PSMA-PET is allowing you to see changes (for better or worse) that might not be reflected by standard scans and lab work. It is fairly early in the therapy... so even while results are disappointing, so far, perhaps the situation is less dire than your impression. (While mine is probably more dire than I think, lol.)
Of course... but each treatment in the "stalling-the-beast" arsenal should give you a few months to many months, possible even years. How have your ALP numbers been?
Yes, I believe 20% increase in pre-existing tumor... but also defined as appearance of new tumor sites and their subsequent growth, although those new sites have to be of sufficient size (whatever that might be).
Your radiographic progression is a better demonstration of progression than PSA. The important consideration is whether your MO and your insurance will agree to do it.
I was wondering about two things, with regard to SOC definitions and insurance:
1) For the the definition of "castrate resistance," can a non-rising PSA be ignored in favor of PSMA-PET results?
2) When PSMA-PET (or other scans) show both some increase in tracer uptake AND some spots that appear to be healing, what objective standards tell docs and researchers that the disease is definitively progressing vs. being essentially "stable?" Or is it subjective to a degree, depending on who's looking at the scans and doing the analysis?
(1) Yes, or any other measure of radiographic progression.
(2) There are four categories used that are defined by objective RECIST 1.1 criteria: Complete Response, Partial Response, Progressive Disease and Stable Disease. Here's how they are defined:
Thanks. Still not sure why my new (but admittedly small) skull mets were not considered "disease progression" when they appeared slightly larger on their second showing on scans... seems to fit the definition given here.
I don't think that what you are seeing is enough to justify jumping off this horse and onto another. I would seek an FDG PET scan to see what is going on between the nodes that seem to be healing vs. this new one appearing when viewed on the PSMA PET. I'm interested in noahware commenting that his qualifies as "stable disease" when some nodes are decreasing and others are increasing.
Remember that we aren't that experienced with PSMA PET yet in terms of using it to declare things like radiographic progression because it can be so much more sensitive than other scans. I did a PSMA PET a year after Lu-177 treatment, while my PSA was undetectable, just to see if there was any remaining activity. It showed low activity that didn't show up on FDG PET scans until a year later. The way I interpret these two scans is that the PSMA scan will show the existence of the cancer but the FDG scan will show how metabolically active it is.
I also note that you seem to be on an eight-week treatment schedule. When I was treated in Munich they really wanted me to be there every six weeks because of their experience with the cancer starting to come back by the eight-week point. So that might be a question for your MO as well.
thank you for your input- yes the half life of LU177 is supposedly 6 days, that means that in 6 weeks there is less than 5% active and releasing energy- makes sense and I will ask
My thoughts are that the bone mets are keeping the PSA above .1 and therefore the hormone treatment is essentially working except for the bone mets. I would think that bone mets would be more resistant to chemical treatments, kind of like they are protected by the bone material, but may be best treated with rad therapy rather than chemo or hormo.
that’s kind of what i think. But if the progression on a couple of spots makes me “hormone resistant “ that opens a different number of therapies that could be covered by insurance- ie Provenge and others
I wouldn't worry about being castrate resistant this early on. Your PSA plummeted dramatically from ADT+Lu177, and it isn't climbing back like crazy now. You are winning some/losing some as shown by your scan but it's not out of control as it would be with castrate resistance. Hopefully your MO will clarify this in your meeting (today?). The only measure by which you are thinking you are castrate resistant is that you have an increase in PSMA activity in one place, and I doubt that someone would put that much weight on this one finding.
My MO's philosophy is to stick with a treatment until it stops working and I'm not sure that you can say that yours isn't working.
Steel. Please way too early to worry. I had SABR (Stereotactic Ablation Radiation) to my T 5. You get a PSA bump with Radiation. I view Leutitium like liquid Radiation. My Radiologist asked me to wait 3 mos after T5 SABR knowing my PSA would bump. Killing PCa cells give of PSA. It has been widely discussed here previously.
So your T8 can be treated in 3 days of SABR. Painless. After the 3 month wait, my PSA has been lower each of last 3 x 3 montly tests. You are good. Enjoy your life. Live. Enjoy your bucket list. One at a time. Best to you and yours, Mike
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Mets to lungs and lymph nodes need some advice 
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