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I just found this forum and have no idea what the "sentiments" are regarding renegades like myself. I know I would be royally ridiculed/flamed on other forums dealing with PCa. I was diagnosed in Feb last year with PSA of 32 and metastatic disease. Gleason 4+4. Asympomatic. Went on bicalutamide and degerelix. No bad side effects except for lack of performance and muscle wasting.
It seems to me that the SE's of T restriction are devastating (and yes, of course the thought of cancer is devastating as well). I would like to go on a hormone holiday. I have read a chapter in an alternative book about Dr. John Lee and his opinion on restricting T in PCa patients and it makes sense to me. I have read the history of Charles Huggins and his discovery that T "stops" prostate cancer - based on a mere three men and questionable methodology...yet an entire industry is based on this finding. Yes, PSA goes down when T is withdrawn, but T is needed to make PSA.
My PSA went down to 0.24, then right after adding finasteride, went up to 3.2 and is probably still rising. The onc pulled me off bicalutamide to see what would happen. I feel great and have been on a strict diet and various complementary therapies. I lost a lot of weight, got fit, and no longer take BP meds or statins.
I have also been following the work of a Dr. Morgentaler from Harvard who says this whole Huggins thing is based on nonsensical assumptions and that T. is not the feeder of PCa. With all the respected PCa docs, like Strum and Scholz, Lam and Myers saying T is the culprit and that a PSA over .0-whateverresults in shortened survival, it's hard to even get an answer from forum experts without being blown off for being an idiot.
Guess I'm sounding off a little but I'm frustrated with the lack of willingness to even consider this point of view. Does anyone with metastatic disease have experience of hormone holidays? I believe we are all responsible for researching and managing our own health and treatment. Cheers, Donald
Donald,
I have found that the more I read about PC the better I understand the problems in treating PC and why there still is a lot of confusion. I am also able to understand why I have had the treatments I've had so far. If you are up to it, try the research papers available in the PubMed government database. There are new research papers coming out every week.
You will probably get a lot of "push back" from oncologists if you suggest having less treatment than they are prescribing. That is because in their mind you have such a high risk of dying within five years so they believe you need maximum treatment (i.e. continuous hormone treatment) so that you will be alive to get the next round of new PC drugs.
Thanks Frank for your input. Much appreciated. The confusion is completely baffling to me. So is the hostility if one refers to Dr. Morgentaler's research on Huggins' "discovery that T feeds PCa." Yet here is a brilliant young man who questions, questions, questions and dares to think out of the box.
