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Re: Interesting to see what this famous Doc uses for his own PCa

The DES to which Bob refers is Diethylstilbestrol (you can see why it is referred to as DES!)

It would have been my treatment of choice but I couldn't find a local oncologist who would adminster it. It was fairly widely used before the development of the very expensive drugs now used for ADT (Androgen Deprivation Therapy)and is still used in Britain by some doctors.

I believe that it's poor reputation - of being associated with thrombosis - is based on studies using doses much larger than required. Studies where smaller doses were used showed similar treatment results and very low levels of side effects.

Well worth investigating if you can find an understanding doctor

All the best

Terry in Australia

Re: Re: Interesting to see what this famous Doc uses for his own PCa

By chance, when I was lokoing for some old studies n spontaneous regression - discussed on another thread below - I found this item of interest to those considering DES therapy:

Bissada NK; Kaczmarek AT. Complete remission of hormone refractory adenocarcinoma of the prostate in response to withdrawal of diethylstilbestrol. Journal of Urology, 1995 Jun, 153(6):1944-5.

Abstract: The phenomenon of regression of adenocarcinoma of the prostate after the withdrawal of antiandrogens is well documented. However, to our knowledge we report the first case of durable complete remission of hormone refractory prostate cancer after cessation of diethylstilbestrol. The drug was discontinued because the patient had disease progression while on diethylstilbestrol and withdrawal resulted in durable remission. In more than 3 years of followup since discontinuing diethylstilbestrol there has been no evidence of clinical or biochemical recurrence.

Of course it is an old study and pre-dates PSA testing so there may well have been biochemical evidence as currently defined.

All the best

Terry

Re: Re: Interesting to see what this famous Doc uses for his own PCa

Hi Terry
I agree with you my husband's oncologists refused to administer DES for my husband too. It does have a bad reputation in causing thrombosis though it is effective . I wonder why oncologists do not give it with blood thinners .
thanks
Liliana Khoury

Re: Interesting to see what this famous Doc uses for his own PCa

Thanks Terry it is hard find any data on DES but there is some, the Journal of Urology article from Nov. 2003 is a fabulous read on it and lead me to say yeah...that's it, you can have the LHRH side effects etc. After having 8 consecutive rises on ADT3 all very small (month to month), went to DES, side effects stopped, psa dropped within 1-2 weeks and stayed down, stayed on DES 1.5 yrs., then went off it totally for 2yrs. (drug free), just restarted as psa change some. I am glad I found an open minded onco-doc and he is very honest and frank about PCa, he leads a support group for PCa, I was a member of the group for about 1 yr. before I even considered talking to him about being my doc...always leary of agendas and docs.
Anyway lots of ways to battle PCa, look at everything even outside the box is in your possible best interests.

Re: Interesting to see what this famous Doc uses for his own PCa

Liliana- oncologist do give it with blood thinners or atleast tell patient aspirin with it is a must. Back in 1905's they were in effect dumb and didn't know better....gee...go figure...they missed that one.

Now the real reasons many docs don't prescribe it (my theory-of course with merits): 1) docs make no money on this at all (make plenty on LHRH drugs) read about the lawsuits via Google they lost for briberies, kick back etc...paid out hundreds of millions and never slowed down sales to this date. Do you know what these drugs cost??? Plenty of $$$

2) if a patient ever did get a DVT (deep vein thrombosis issue) or a blood clot and especially if they suffered or died....the doc cannot prevail in a court of law, as the old DES garbage from 1950 era will be shown as factual presidence of known risk factors. (Journal Article Nov. 2003-mentions 1-mg has been found to be safe)

3) If alot docs start prescribing this and enough patients see the results and discuss the beauty of losing those side effects from like LHRH or other heavy side effect drugs....what might happen to the cash cows I mentioned (the profit stream). Those guys are lobbying to make compounding drugs illegal so that we cannot have that choice (I heard such news), all types of compounding drugs. Take our choices and keep those prices and profits high...great gig for those sob's.

4) patients are told it will kill you or you will turn into a woman overnight...yada...yada...yada..
ask patients whom use this what there take is on it.
Like the side effects of LHRH don't make you feel like less than a man???????? Pullll-ease I cannot tell you how much better I feel in comparison to that stuff. I wouldn't continue using it if it were not decent and uneffective, but it is. I could dump it down the road...if I believe it is the thing to do. It is nice to have choices in the mix, alot docs limit those choices, only onco-docs might consider prescribing this.

(see my Mentors journey herein- Rob Parsons- under radiations area)

Re: Interesting to see what this famous Doc uses for his own PCa

Hey is there a correction option on postings, I had typo errors on the last thing above this and that would make a difference.

1905 should be 1950's

uneffective should have been effective

(maybe I have C.R.S.= can't remember sh_t.)

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