The continuing saga of Zufus (Bob) & Twilight Zone of Psa's and intermittent DES

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Date Joined Dec 2008
Total Posts : 3149
   Posted 2/16/2011 1:20 PM (GMT -6)   
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 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 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. smilewinkgrin tongue    Never should have fired him!!!! tongue
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)

James C.
Veteran Member

Date Joined Aug 2007
Total Posts : 4463
   Posted 2/16/2011 2:35 PM (GMT -6)   
Zufus, what's the biggest side effects of DES, similar to lupron+casodex+proscar? Other than the obvious pocketbook hit, that is..
James C. Age 63
Gonna Make Myself A Better Man
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 01/11-.09
ED-total-Bimix 30cc

Regular Member

Date Joined Jan 2010
Total Posts : 363
   Posted 2/16/2011 3:39 PM (GMT -6)   
Thanks for sharing your path, good information for us who are building an arsenal of information for possible use in the future.
Dave in Durango CO
07-06 PSA 2.5
01-08 PSA 5.5
09-09 PSA 6.5
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5
03-01-10 Age 55 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson
03-16-10 Path' G-8 (4+4+5) Bilateral involving 21% of left lobe, 3% of right lobe, SVI, Focal positive margin, pT3b NO MX

All PSA as of 1-25-11 <0.04

Veteran Member

Date Joined Apr 2008
Total Posts : 847
   Posted 2/16/2011 3:54 PM (GMT -6)   
Zufus, thank you for your insights especially regarding DES.

I'm looking at ADT sometime in the future. My uro wants to hold off until PSA hits 10 -- told me it would "turn me into an old man" -- as if I'm not already!

I will suggest to him that rather than wait that long, something like intermittent DES might be an earlier option. Thanks for the alert.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4/12 cores
Non-nerve-sparing RRP 7 March 2008 age 63
Organ confined, neg margins. Gleason downgrade 4+4=8
Fully continent
Bimix worked well; now using just VED
PSA undetectable at first but now 0.4, doubling time 7 months
No radiation but ADT coming unless I can slow down the rise...

Veteran Member

Date Joined Dec 2008
Total Posts : 3149
   Posted 2/16/2011 4:30 PM (GMT -6)   
James C.- occassionally one has tender nipples (LOL) which if hit actually might kind of hurt, but this is off and on or occassional thing. You can handle possible gynecomastia or breast enlargement with light duty radiation via electron rays to stop future enlargement, this can also happen using casodex and now warnings even mentioned with avodart or proscar (I think recently). I got that done early on and that is a non issue, you also could take a drug to prevent enlargement, it may work...I didn't want anymore drugs. Their is a risk of blood clotting or deep vein thrombosis, but with 1-mg and blood protime INR tests you might be assessed to use a certain level of coumadin (blood thinner to prevent those issues). Basically, I say about no side effects for me and it cancels hot flashes and sweats even if you still have Lupron or LHRH drugs in you (it did for me and others)...plenty of nasty side effects using the ADT. One could use estradiol patches or gel and get comparitive results (they say) or use emcyt (estramustine) which Dr. Fred Lee used for years on his own case. I feel like a guy whom is not on any drugs while using it, so go figure.

Daveshan/Piano- be prepared for the majority of doctors to laugh at you and say it is junk or it will kill you, of course they haven't used it, cannot profit by endorsing it, or really know all about it nor read the Journal of Urology Article from November 2003 on it. There is no money to made on it period. The doc runs the risk that big) 'If' you have a blood clot or DVT issue, you could sue them and likely why bother..when you can give Lupron and make $1000-2000 per shot profit and likely never get sued(you can buy Lupron with an Rx in Canada for as low as $195 in US funds-fyi). Dr. Premoli in Argentina has been using estradiol patches for many years and says no DVT's or clots, people cannot afford Lupron anyway.(fyi) Anyway love those naysayers and glad I went against the grain.  Not saying for you take the same path either.  It is interesting about PCa and the money angles.

Post Edited (zufus) : 2/16/2011 3:19:05 PM (GMT-7)

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