I had a really great meeting with my Onco today and a lot was discussed.
I would first like to say that I have complete confidence in my Onco. His reasoning, experience and attitude are in concert with what I think every patient should encounter.
Some of the things discussed this morning will fly in the face of some of the more accepted norms that have been expressed here. So just don't shoot the messenger, okay. Of course I expect dialog and conversation, after all that is how each of us learns and contributes.
First thing when he came in he gave me two different charts/scales and told me that my PSA doubling time was between 8+ and 16+ months. 8 if we go back to September 2010 and 16 if we use all of the tests since January 2011, which is 4 tests.
I asked if he was going to talk about
or suggest HT. His response was NO, not at this point. I asked him at what number would he recommend it. He said that there is no magic number. There are three things that would warrant moving forward with HT. 1)Tests indicating Symptomatic Met activity, 2)Tests indicating Asymptomatic Met activity and 3) A PSA doubling time of 3 months or less.
My current bone scan done last week shows no MET activity at all. Neither in or around the previously treated MET or any new activity.
It was here that I brought up the subject of the F-18 Sodium Fluoride PET/CT clinical trial. I had brought a copy of the trial outline for him to read. I asked him if my assumption was correct in that of the available scans/tests the nuclear scan was at the bottom and the F-18 was at the top. He said yes. I also reminded him that I had asked why was he not using the F-18 again this year? Did the fact that Medicare (thence the ins industry)would not approve the scan have any influence on the tests he had ordered. He said absolutely.
He said if I could get on this trial, even if I had to pay my own travel expenses, I should jump on it as soon as possible. The information would be invaluable to me personally and his ability to treat me going forward. He said that he would have more information from this than he could hope to have with any of his other patients.
Additionally, my participation would be of benefit to the PCa community at large. This is a valuable trial if the hopes of the medical community and the PCa patients are to be realized of having this tool available for all. Needless to say, I have already placed a call to the NCI this morning.
I then asked him something I had forgotten. What part of his study and practice is made up by PCa. He said that about
70% of his work is with PCa and the remaining 30% is Hematologic.
opened the door for a conversation about
the Feraheme/MRI test. I told him in detail what I knew about
the Combidex trials and now the work by some to use Feraheme as a contrast agent.
This was a lengthy conversation to say the least. First thing he said was that Feraheme is only used as a last resort in dealing with Iron Deficiency Anemia. The potential for side effects and life threatening complications make it the last resort.
I told him about
the clinical trial that was being conducted by the NCI and the selection criteria of being diagnosed with PCa and having surgery scheduled. He said that this was at this time the only way that such a trial made sense. If they found suspected nodal involvement, these nodes could be removed for verification at the time of surgery. There is no better way to test the outcomes of such scans/tests than having the node in hand for study. It would also potentially signal the possibility that the PCa was not organ confined before surgery.
The semi-trial that I had discovered would not have the same value. How are the results verified? And, it is already know that I have PCa that had escaped the organ before surgery. There can be very little doubt that my PCa is systemic. It is after all how the crap is moving around and finding my bones in the first place. The test would be of little value to me and the risks are far too great. Additionally, we discussed that the doctor that had talked with me said that once the nodes are identified via the scan they are radiated and may or may not be followed by HT. I don't remember his exact words, but there was a little smile on his face when he said, How do you radiate something when you have no way of verifying the validity of the test to begin with, except through some form of biopsy. The conversation went on for a while, but I felt he had made some very valid points. He added, that there is a rhyme and reason for formalizing trials to begin with. It puts the data in position for scrutiny and verification for all the medical world. Nuff said on that one for sure. He affirmed my thoughts and in fact at one point said that the way it was being done was "Sketchy" at best.
So to recap; my PSA at this point does not warrant beginning HT; I have no new MET activity; he strongly believes that I should get in on the NCI F-18 trial; he will see me in 3 months; he will not schedule any PSA tests until then unless I want them; and I should dump all data related to Feraheme as a contrast agent until more trials and data are accumulated.
Feel free to ask any questions. I am sure I forgot something.
Just putting this out there for information,
Post Edited (Sonny3) : 5/23/2011 11:18:29 AM (GMT-6)