Where is recurrence?

[Break60]

Waiting for trial at JH ; scan to find source of PSA increase after stopping ADT.

[Attitude67]

Hello Break60. Hope you get the treatment you need!

[Arcticfox44]

Hello - Is JH Johns Hopkins? I sent my history to their nuclear medicine dept a few weeks ago. Waiting to hear back. I believe they do the radioactive gallium PET scans. Is that what you're expecting to have? I'm on Zoladex (shots every three months) plus anti-iinflammatory pills (Dexamethasone 0.5 mg daily). My PSA has recently been falling -- was 1.6 in November and I will get latest result tomorrow. I've previously had choline PET scans which showed PC only in left abdominal lymph nodes. I had RP in 2002 and salvage radiation in 2008. In 2014 I had robotic surgery in London to remove some of the abdominal lymph node recurrence. That surgery succeeded in knocking PSA from 7 down to 1, but of course it began rising since not all PC was removed. A major issue is how to find exactly where the disease is and zap it. I was told after the radiation at Sloan Kettering in 2008 that they couldn't give me any more. But I'm hopeful that some of the new ways of delivering targeted radiation right to the cancer cells may be possible. I plan to consult Dr. Eugene Kwon at the Mayo because he takes an aggressive approach.

[Break60 in reply to Arcticfox44]

The PET/CT scan uses 18F DCFPyL .It's clinical trial NCT02825875. If you're looking for a RO who takes an aggressive approach and is absolutely tops call Dr Michael Dattoli in Sarasota. He zapped my pelvic lymph nodes with 75 grays

[Lombardi24]

Is this the trial using periodic high doses of testosterone?

[Break60 in reply to Lombardi24]

No

[Break60 in reply to Lombardi24]

No

[Aussiedad in reply to Lombardi24]

As one old time physician said to me ... giving testosterone to a man or a woman, particularly older folk, is like throwing benzene on a fire ... radical cells that could form cancer love yesyosterone and proliferate as do the cancer cells - testosterone is the ideal food for cancer cells. I know there has been a lot of periodic high dose going on but I'd run a mile from a doctor who tried to prescribe testosterone for me.

I have no history of prostate cancer on either side of my family in known history and a misguided endocrinologist prescribed testosterone for me just because he thought that I 'looked tired' (nothing to do with what I'd been referred to him for - thyroid problem) ... 18 months later - the magical period for the development of a tumour - I had developed prostate cancer 4+3 Gleason and had a radical prostatectomy. The tumour had broken through the walls of the prostate and I was in real trouble.

That endo did not check testosterone levels before prescribing testosterone and did not follow up with testosterone checks on the levels I had in my system while on his treatment - a stupid mongrel!

Cheers, Aussiedad

[Lombardi24 in reply to Aussiedad]

The trials currently under way (BAT therapy -John Hopkins) dose men with aggressive prostate cancer that have also responded well to docetaxel combined with Carbopatin. The thought is that there may be a weakness in the primordial cancer due to a specific receptor.

[Hidden]

1. If they locate a met in an image, what treatment do you plan against it?

2. who is/are the doctor(s)?

[Break60 in reply to Hidden]

To be determined

[Break60]

I've been told that based on the results it would be either systemic treatment for extensive mets or SBRT if only a few mets.

[Chask]

Break60, I was in a similar position, rising (rapidly) PSA 12 months after last ADT treatment. Had a Ga 68 PSMA scan - very new, but already outdated by the 18F DCFPyL scan.

That showed no mets - well one indeterminate spot on my right scapula - but plenty of cells still in the prostate bed.

Don't know if that is good or bad! Good for no mets (yet) but bad in that there is no treatment other than systemic for the prostate bed as I have already had surgery and RT. Would love to know why the RT didn't get it all, was it bad planning ot bad execution? Will never know, and now just have to manage it. Expecting to go back on ADT at next Onco meeting.

Chas

[Break60 in reply to Chask]

Yes I would want to know why PCa is still in the bed. I had an MRI which found two hot spots in iliac nodes and I had entire pelvic node are radiated. Subsequent cat scans and ultrasound found nothing in nodes or bed or bones or other soft tissue. I've subsequently been informed by JH that JH has another trial "ORIOLE" using 18F DCFPyL and applying SBRT to specific mets if the scan does not indicate that systemic is called for . I'm leaning in that direction.

[Chask in reply to Break60]

Break, I understand exactly where you are coming from. I'd also be keen to treat individual mets if it was possible, but you know that Tall Allen on the HW forum regards that as a waste of time. A bit of whack-a-mole. Hit what you see today, and tomorrow 3 more will pop up.

But you gotta do what you think is best for you.

Chas

[Break60 in reply to Chask]

Chas

Yes I'm aware of TA's view and I've mentioned it to my RO. I went thru 50 sessions at 1.5 grays per ( 75 grays) to all pelvic lymph nodes . Not sure that necessarily counts as whack a mole since it covered the entire pelvic region ( big mole!!) but over a year later there's apparently been no recurrence there. I need to learn more about SBRT before I decide to try it if scan finds a few mets elsewhere.

Bob

[Hidden in reply to Chask]

There is a trial of J591 at Weill in Manhattan that you might qualify for.

Let me look for the ID.

Ah. You have to have your prostate. NCT02693860.

A similar one: NCT02552394

Only ten spots. My PSA is going down at the moment.

Caloric restriction I think. If it goes up, I probably will go for this.

[Break60]

Latest monthly PSA went from 1.1 to 1.3 so it's slowing down after monthly doubling! Not sure what to think of that. But I like the " trend" lol. I've given up thinking about a scan as part of clinical trial. Thinking axumin scan at Sand Lake or c11 choline at Mayo.

Bob