Post by joeuro17vbnm on Feb 3, 2014 12:58:29 GMT -8
High risk patient from day one Mar-Apr. 2002, lousy pathology 12/12 all 85-95% volumes, gleason scores 7,8,9's (2 sets of those), psa 46.6 and prior into ER for total urinary blockage (super painful fyi). Got 8 opinions (1 was the guarantee program-lol) all others not saying cure was even possible, Dr. Mani Menon refused me surgery (glad he did too, he was correct it wouldn't solve the dragon issues). So, steered into some local Uro whom seems chummy decent. His program was Zoladex or Lupron for life ($$$), I demanded casodex and proscar and went ADT3 and choose radiations along with it, per Bolla abstract studies (not much simply known in 2002, let alone still today). I did search locally and ended up with 2 machines: Neutron (cyclotron) & Photon (IMRT), mega limit doses too.
Well I question things and glad I did, uro doc switched me from zoladex to Lupron and I wondered why? I saw the billing info on his gals desk, Lupron cost insurance company $700 per shot....so it was a love thing. (ha) Being a Uro he had no great incite into longer term oncology and didn't run specialized blood or urine tests (hindsight). He got fired after 2 yrs., also my ADT3 was failing every month but small increases (I got monthly tests, because I could). Found an open minded doc whom is a hematologist and handles some cancer patients, happens he started a PCa seminar group thing (different from others like USToo etc.) His Journal article he brought in 2004 on DES drug sounded real good to me, and so I got a script. It lowered my psa and stabilized it very well, for about 8 years thereafter and no side effects compared to ADT3 and no costs, no patents. (hmmmm).
Well it failed about 1.5 year ago and went to other drugs and tried a number of them with either no results or very short term results. So, tried Eulexin, estradiol patches, casodex+estradiol combo (worked for about 2 months), Leukine, Ketoconazole (no help), Keto+Leukine+Estradiol (usually very useful, no results and might have been hospitalized cause of reactions thereof). Retried Lupron and proscar and no results. Got onto Zytiga in July 2013 and seems to be working still with lowering psa's and other markers looking fair to good. I figured that if Keto failed then Zytiga should cause they both target CYP17 enzyme, well now I know first hand they are not directly comparable. Little note on Zytiga, some mention of the unknowns of taking it with food, and hinted at PCRI conference that one might be able to take less drug when w/food. Well I have been taking mine with food (like dinner) and using only 2 pills a day instead of 4, seems to work and not any really nasty side effects in my case. Your case could be way different, and the standard caveat never do anything outside of what you doc prescribes. Of course I listen to my doc, but also try a few things because I can and might be able to share the fun of a rebel type. I also, tried Doug's protocol it is simple but it didn't render any tangible results I could define, maybe slowed my doubling time when used!
There is no one single drug that fits all, they may be useful and they may not, not easy for anyone to know up front....although some like Dr. Myers might have the edge on knowing when and what to switch to. It is your journey, might decide how you wish to fight it and in what manner or how extreme do you go as to side effects and quality of life. Still contemplating those thoughts too.
