Radiate pelvic lymph nodes or start Provenge and Enzalutamide ??

[dave100]

DaVinci RP in Nov 2012, Gleason 9 and PSA was 2.0 at 3 month check. Rad Onc advised salvage IMRT not likely to help as PSA was indicating systemic disease so we began continuous ADT which took PSA below .1 for the next 3 yrs. In Jan 2016 my PSA was again at 2.0 and we revisited the salvage RT option to the prostate bed in hopes there would be some benefit now that my disease had become castrate resistant but after 37 IMRT sessions my PSA had risen to 9 and so I sought out a clinical trial to get more aggressive. CT and bone scans required for the trial showed nothing, but snafus in the trial process caused delays and re-scanning twice more over the following 4 months which suddenly showed a couple of suspicious pelvic LNs. Trial clinic went silent and didn't return my calls for 3 months so I went with my scans in hand back to my original cancer center where a different Rad Onc advised we could target these nodes with IMRT ( stressing that there were no promises of course) and we proceeded with preparations for IMRT. Suddenly, out of the blue, the trial clinic calls me with excuses for the delay and I explained my situation to them. They are now saying Provenge and Xtandi are the way to go and that my IMRT plan is a waste of precious time ( PSADT is about 3 months). Since they were silent for the past 3 months and as they did all my scans they were well aware of the LNs I am questioning this sudden interest in the ticking calendar. My gut tells me to proceed with the IMRT and follow up with the trial clinic for the Provenge/Xtandi treatments. I suspect I may be oligometastatic but I recognize the danger of delaying effective tx of systemic disease. The trial clinic seems to feel I'm making a big mistake. Any ideas???

[gusgold]

Dave,

I would say the Provenge/Xtandi is a no brainer...where is the trial...I sure would want to try and get in

Gus

[dave100 in reply to gusgold]

Once you're metastatic both treatments are FDA approved. My scans disqualified me from the trial I was shooting for.

[BigRich in reply to dave100]

Dave,

What trail where you shooting for, and why where you disquailfied?

Rich

[dave100]

It is a trial for darolutamide sponsored by Bayer in treating non metastatic, castrate resistant PC.

[Hidden]

Have you tried F18 Sodium Fluoride PET Bone Scan, the C11 Choline PET at Mayo Clinic (for PC recurrence), or the C11 Acetate scans, or "ordinary" scans? Each has its own set of pros and cons, so none is yet superior. My choline scan found lymph node mets their FDG and MRI scans could not. One significant node outside the target pelvic field might be a showstopper for pelvic field radiation.

Have you checked for the AR-V7 gene variant that reduces the chances of Xtandi working for you? It's not the showstopper it was once thought to be, but it does, at last reading, very significantly lower the odds of benefit.

How about high testosterone treatment, such as BAT? Johns Hopkins and Fred Hutch are researching it, maybe in part because Compassionate Oncology/Leibowitz in Los Angeles has been publishing great results with it for 20 years. Just think ... an mCRPC treatment that makes us feel BETTER rather than worse AND often extends our lives WAY more than Provenge does. The minute I smack of castrate resistance (I'm oligometastatic now), that's my next stop. In fact, I go to Leibowitz next month to investigate and very likely initiate his much less onerous, much shorter, and usually more effective ADT and chemotherapy protocol. I would not put myself through desperation methods before checking out his websites very extensive lectures, papers, and videos. He treats only PC, and his innovative, Medicare- and FDA-approved treatments have helped many hundreds of men from all over the world.

[dave100 in reply to Hidden]

Thanks for your reply. Four years ago (when it might have done me some good) I brought up the subject of the choline and/or acetate scans but the Rad Onc I had at the time discouraged me from it saying that he wouldn't use those scan results to guide my treatment and instead just started me on ADT. At that time Mayo was beginning to use these scans in their clinical practice but my doctor felt it was a gimmick, etc. I have since become more aggressive in my discussions with these doctors I see. That ArV7 testing was an integral part of the other trial I tried to enter but that trial was halted ( Galeterone) so I couldn't get the test done. I live in NY where that testing is not allowed according to the Johns Hopkins rep I spoke with so the trial was my only option to access that test.

[Hidden in reply to dave100]

Lessee ... a harmless (what's a little more radiation at our age?), SE-free, non-invasive, advanced, insured, nap that with any luck may spot an isolated rogue met whose pinpoint removal might reset our PSA for years ... is a gimmick? Well, 4 years ago, maybe.

HOWEVER ... a rad onc who says that a lifetime of nasty chemicals and all its many very significant SE threats is clearly better than the above just-in-case scenario? I wouldn't be "more aggressive" with docs like that; I would have (and have) fired them and moved on.

I can't imagine how NY could deny you any test you want in another state. I know it's strict ( lived in upstate NY), but you're still a free man. If I wanted to step into PA and set myself on fire, that's none of NY's business unless there's a south wind blowin'. Maybe it's an insurance coverage issue, or conceivably your NY rad onc couldn't irradiate based on a scan (I doubt that, because what ELSE could he act on?).

Did your rad onc run your numbers through MSK's salvage radiation nomogram ( mskcc.org/nomograms/prostat... ) before your SRT? It played a big part in my decision at that point, and ignoring that valuable resource would have been unconscionable for him.

[dave100]

Yes indeed I was pleased that he retired (he was chief of the department at the time). When I revisited the radiation department 4 years later I had a much more open minded oncologist and this brought me to the crossroads I am now facing.

As for the ArV7 test, the way it was explained to me Johns Hopkins is prohibited from testing patients from NY or Florida due to lab certifications and whatever lists these states have approved. Somehow trial sites have a way of bypassing the prohibition but as a patient my hands were tied. I asked them if I could just go out of state and get it done but they explained it wasn't quite that simple.

My problem has been disease too small for detection by normal scans and now that it has advanced the chances of effective treatment have diminished. My thought is since we now have a target for the radiation we can treat that and then move on to the systemic treatments available which hopefully have a better chance of effectiveness with a reduced tumor burden. I imagine they can't concurrently treat me both ways so I am leaning toward the radiation first and then the other stuff. Perhaps I'm influenced by the apparent lack of urgency on the part of the trial clinic doctor until he heard about my plans to radiate. I'm sure he's a busy man and simply lost track of me but it's difficult to overlook. I thank you again for your attention -- I think it's helpful for me to get my thoughts out there as it helps me to organize them.

[Hidden in reply to dave100]

Whether it's open-mindedness or simply keeping up with the research varies among doctors. The first is vital, IMO, and even if the Standards of Care cookbook hasn't changed yet, I want my providers to be tracking at least the larger trends. I can think of many very important medical and health issues in which the treatment "cookbook" most providers use is decades out of date.

I vaguely recall now that a couple of states had problems with the ARV7 tests. It would be even more puzzling and upsetting if it were an established, almost fool-proof marker such as the BRCA genes, but it isn't that cut and dried.

Re: your "disease too small for detection by normal scans and now that it has advanced the chances of effective treatment have diminished" ... We were tracking my PSA very closely as it advanced to and through the very narrow window of SRT efficacy (0.2 to ~1.5). "My guy" wanted immediate SRT, but for many reasons I preferred to put my faith in the whac-a-mole game. Even the c-11 scan couldn't see my mets until my PSA hit ~40, but when it did, it confirmed that IN MY CASE I was right. That not only validated my decision and made me feel better, but it also validated my faith in my research process. In fact, I began listing some reasons in hindsight about that decision. I stopped at 21 reasons on the plus side, none on the OOPS side. I punched the air and got back to my research with renewed vigor.

I don't have an opinion on your dilemma, because each case and person is unique, but I fully agree both emotionally and pragmatically with your, "it's helpful for me to get my thoughts out there as it helps me to organize them". I've more than once come to conclusions about my own course of action while and because I was typing a response up.