I have used DES (diethylstilbestoral) the made man compounded, no patents, cheaper than whale crap drug, probably verterinary grade(LOL), drug for 6-7 yrs. total now. Prior to that used ADT3 drugs for about
two years (2002-2005 early)= lupron+casodex+proscar and hated the side effects, especially after two years of sweats, fatigue, weight gain and blah's. Also, the fact that I got monthly psa's (walkin tests at Crittenton Hospital for $15 anytime), so when I saw like 8 consecutive very tiny rises in ADT3 (costing $13000 a year back then-fyi), I was worried and failing sooner didn't look good for the future.
Thanks to keeping my eyes open and attending Dr. Birch's PCa seminars, which I did even back in 2002 in the beginning. I later fired the cashing in uro-doc whom was going to keep me on Lupron for life and made other types of errors...so he got fired. At the seminars(2004-5) the onco-doc passed out a journal of urology article on DES and discussed it in our class thing.
My eyes got big and seeing urology doctors whom did studies for a Journal article, saying this drug in 1-mg was safe and even worked against hrpca (refractive PCa) and would work when lupron or casodex failed, and no bone loss or memory loss and lesser to maybe no side effects....decided I am ready to switch.
Now he was just discussing it as something to have knowledge and not endorsing it to anybody, he passes out various Journal information and newer drugs or information findings and such info.
Anyway to shorten the story I have had immediate success on DES, lowered my rising psa that was supposed to be controlled by ADT3(was failing in 2004), stabilized it so well that I decided to go off it for like one year, without any serious rises. I have gone intermittently and sometimes randomly and upon my own choosing and my onco-doc has no issues and mentioned might even be better to go intermittently or on/off and apparently my psa control and long term useage seems to validate all that...even though it was of my free choosing. My doc is not the Soup N_zi type and preaches that too much is unknown on PCa and that docs in general on all of this, don't have all the answers. It is very complex.
I have had around 8 different scenarios of psa rises over all these years when going off DES, whenever I went off the drug, the durations varied alot, as I would catch it by monitoring psa's often. Recently I had the largest Psa of all at 4.09 in Jan., but I had been off the drug for like 2 months or so, got back on again Feb. 15th test shows Psa at 1.35 which I was elated to see after the largest psa I have had post treatments. Right now I am contemplating trying a new test of either going to 2 mg DES and/or adding a small amount of DCA (non-FDA approved) and monitoring results. So, if I do those I will return in a few weeks or so and see if the psa declines and if so, by how much. The fact that it still shows signs of working in my scenario (6-7 yrs. of useage overall) and at 9 yrs. since Dx with high stats and of HT therapies, has exceeded my expectations. Should I fail control in the future I would be looking at another alternative drug, there are a few that can work and show results.
That's my story thus far, I left out the 8 opinions, firing a few docs along the way and the details of my radiation protocol and more. That can be found on www.yananow.net if someone wanted to read it all. Oh DES costs me $125 per year delivered, coumadin I use is not included and would exceed that cost, insurance pays most of that one. So, ADT3 was $13,000 a year alot more side effects, less control, potential huge bone loss and memory loss, has issues associated with weight gain and even cardio things (now) and by now I would likely be fubar on using it....yeah bad choice going against the uro-docs expertise and agenda. Never should have fired him!!!!
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage
Post Edited (zufus) : 2/16/2011 11:24:03 AM (GMT-7)