PSA - BAD NEWS -

My first PSA 6 weeks after surgery was 2.41- Friday got results of 8 weeks out - 2.6 - doubling time ~ 4 months -

The only possible good thing about it is, it qualifies me for more trial PET Scans, such as the 68 Ga PSMA.

The thing about many of these scans is most want to charge for the scan and I was informed by another that I would not be able to get my results. Not kidding you, one scan wants you to pay a few thousand dollars and you do not get the results. One trial scan, in California, is still a possibility for me, but I need to clarify when I get the results.

I may still go to Heidelberg, Germany to have the PSMA scan done there. I was in the Army and stationed close to Heidelberg in the late 60's. Unfortunately, Turley Barracks, where I was quartered, is all padlocked up.

Bobby Mac

Bobby, sorry to hear this result, not what u had hoped for. Inwo, not what any f us were hoping for for you. But no doubt you are all over it, and you've been here long enough to know, that you will be able to manage the situation, with the help,of your doctors.
Hope you work out the scan thing, to get as much data as possible.

BillyBob@388-

I plan to wait until I learn results - if distant Mets detected, probably will pass on RT-

I have a cancellable date for the German scan of August 4th. - If I can get the California scan before then, and I should find that out Monday, I would take it. That's provided they give me results after the scan.

Bobby Mac

More from Stanford -

"are you aware that this study does not provide compensation for participation, but rather costs a total of $2722.00 for the experimental drug? This can be a burden for some individuals, and most insurance companies don’t cover the scan"

You pay, but don't get results!!

Bobby Mac

Thanks, Allen -

I have looked at some of those trials, but you are correct, I am concentrating on the PSMA. It is proven in Germany to pick up minute traces of cancer in both soft tissue and bones. Not sure how good those others are?

Thanks for all your information --

Bobby Mac

This is a much more complex subject than you may be aware of. There are various PSMA ligands, and more in development, and they have varying capability of targeting the PSMA on the PC cell surface. Several different ones have been pilot tested in Germany. Johns Hopkins, for example, believes that the PSMA ligand they are testing (DCFPyl) may be more specific than the one at NIH (DCFBC). Some of the ligands are monoclonal PSMA antibodies, and some of the ligands are small molecules that have specific affinity for PSMA. There is no current consensus over which is best. PSMA has been called into question as the best target because it is known to occur in healthy cells in other secretory glands like tear ducts and salivary glands. There is some danger of toxicity to those healthy cells because of this. So far, all trials in Germany and elsewhere have been small.

Researchers have been looking for other more specific PC indicators. FACBC has been tested at Emory for over 10 years and seems to have all the qualities they seek. It uses a biosimilar amino acid that has specifically high uptake in cancer cells, and very low uptake in healthy cells. It probably has the longest testing history. It is also the only one approved by the FDA, which means insurance may cover it. Clinical trials have already expanded to Cedars-Sinai, Norway, the UK, and several more sites are planned. Of all the new PET indicators, this is the furthest along and would probably be my first choice now.

The one MSKCC is testing is based on a peptide called bombesin which seems to occur on some cancer cells. They have altered the peptide to make it more specific for cancer. Other PET indicators have been developed to target receptors on the cell surface specific to PC - uPAR and VPAC - but there are no currently open trials.

- Allen

MKC calcualtor.. doubling time...your numbers... bobbie mac...18 months... velocity...0.1ng/mL/per month....that may or may not influence your decisions...

Sorry about your results Bobby Mac. I have no knowledge of the scan drug or trials, so I can't provide any info.
It does make me feel sick to my stomach that you would have to pay for a "trial", but not receive any result. All I can do is shake my head in utter disbelief that medical science has come to that. Essentially, have the patients pay for the research directly, but receive no benefit in any form from the participation.

I might be reading far more into it than I should, but on the surface, this reads crazy!

Wishing you the best Bobby Mac!

I found out why some scan trials need to charge for them - from one that charges ---

"Imaging and staging of prostate cancer is critical for surgical and treatment planning. Patients with suspected metastatic prostate cancer will be imaged using Gallium-68 labeled HBED-CC PSMA in order to demonstrate its utility. The investigators plan to utilize this data to obtain further approvals of the HBED-CC PSMA compound, so that this agent will become available for clinical imaging in prostate cancer patients.

This compound has been shown to be superior to choline based PET agents for the staging of prostate cancer, both Carbon-11 and Fluorine-18 compounds. But this compound was not patented and therefore no company or private entity will make the investment required to bring HBED-CC PSMA to market. In the vacuum of availability, academic groups must take the lead in order to collect the necessary data for future FDA approval."

Bobby Mac

Pratoman -

You hit the nail square on the head!!

Bobby Mac

Fairwind -

Thank you for your comment and I see your point.

I don't think waiting a month more is going to make any difference.

It's June 19th and my Urologist wasn't going to start Lupron until mid August and I should have the 98 Ga PSMA Pet done by then.

Bobby Mac

Tarhoosier -

Yes, we certainly are similar - and you are correct, I have a long journey ahead.

Bobby Mac