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How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Here are some examples I either have witnessed or even done in my own case:

ADT3 for 2 yrs. failing with 8 mini rises in 8 months (my early protocols with radiation IMRT)...DES thereafter with 1-mg (Italy sourced)...lowered stabilzed psa's for 8+ years and little to no costs, no side effects per se and felt and looked better overall. Now this has failed recently and unto Keto or Leukine. But 8 years of control vs. 2 years on ADT3 and for laughs DES was $130/yr no patents, ADT used to be $13,000 a year approx. 2002-2004

Some patients have failed on Lupron as per friend of mine, but he only let his psa get to like 1.3 or so (this is after RP and SRT and after HT use of casodex). He start with high psa in 1996, anyway went onto Lupron 15 months ago and then failed with psa to like 1.3 from much lower levels. He decided to revisit Lupron 30 days ago, he psa prior was 2.3 and now is .06 using Lupron again. This is kind of interesting and noteworthy, this man also plays manipulations or sequencing of drugs like a chess game and used monthly psa tests and has used various therapies like estradiol patches, gels and other things.

Rick Profitt of Paact Newsletter stated that he has seen men fail on casodex and yet take nilandron (another drug in the same family) and get new results, same is apparently true with the new drug MDV3100 enzalutamide another drug in this family (aka-super casodex) but this is know to bind to the AR receptor better than anything currently known. I tried Eulexin after casodex and in my case it did not change anything, worth trying perhaps for others....with PCa you sometimes never know until you try something.

One of our PCa friends is into yr. 15 of incureable, he failed lupron like 6+ years ago and via Dr. Scholz go onto Leukine injections and got fabulous low psas and results over 4_ yrs., now that is failing to control his PCa.

Dr. Fred Lee (cryo inventor) is now living into year 33 with incureable PCa, he failed primary and salvage ideas 31 years ago. His drug he chose was just one. called emcyt (estramustine). Rather austounding results, how do you know if you would or would not get similar or great response to it, if you never tried it? Do you think a doc this smart is dumb for not using lame stream 'proven' medicine? Interesting to say the least, read his story after google search and find weblink starting like this: www.rochesterurology----blah/blah-blah His co-office partner is a surgeon from this urology location Dr. Bob Baladament and helped script his overall story.

I could go on and there are other examples, alot of guys in the past used PC-specs (had DES in it apparenly), but those guys using it were happy to get it and saw useful results and low side effects.

Dr. Premoli in Agentina used estradiol patches on his patients they cannot afford Lupron and have no insurance I would guess. He has published some of those results and they were good, no deaths from blood clots etc. Our U.S. Journals did not wish to publish his results even with caveats they could add. (????)

Then there are folklore, way outside the box concepts for fighting cancers, cannot say I have one to point out on PCa, but would be open minded enough to think, maybe something might work on somebody. There is no one size fits all in this, to many parameters envolved.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

You and I have exchanged emails a time or two over the past few months. In response to your current posting in this forum, I read your YANA story and googled DES. At this point could you please address the following issues:
--In addition to the side effects you mentioned, Google referenced loss of libido and impotence as common. Please comment.
--Can you tell us more about your meds,specifically, in reference to DES, always 1mg?, always oral?;amount of coumodin?, your idea or recommended by your oncologist?;vitamin D3, why and how much?
--Do you know of any recent DES studies either favorable or unfavorable?
--What prompted you to experiment with DES?
Best wishes with regard to your current research efforts.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Journal article Nov. 2003 Journal of Urology (lol-they endorsed it here)
http://ffyates.com/prostate/des.pdf

My journal story www.yananow.net/Mentors/RobP.htm

I used coumadin for added safety.

(VACBURG-studies way back in the day 1940's-50's) found even though patients did well as to results on DES (seldom is this mentioned), the ones that got clots or dvt's was the issue to ruin it useage. However, they gave 5-mg and no blood thinners and no screenings on patients risk factors, thus they were stupid back then...and this information is the PR that continues still on why it is bad stuff. This is not the whole story or even true story as to using 1=mg or even 1/2 mg could work, friend of mine tried it in 1/2 mg even though his doc thought it wouldn't work, it did.

My point is question everything, they are cashin on patients, just look at the new drugs $5300 Zytiga and $7500 MDV3100 (great to see more choices or options, the price tags are outrageous).

Now also ask yourself, if you are facing dying with incureable PCa are you going to only look at what is some docs opinion as to which drugs are your only choices? Or do you look at everything and patients with results and if you got results that were better....doesn't results trump all rehtoric? There are docs whom endorse these estrogenic drugs, just not a majority of course and look what DR. Fred Lee used on himself (how dumb do you think Dr. Lee would be?) He is still alive at year 33 now, results you do not commonly see in others, for duration and control. (just sayin').

I have enough evidence in my case, failed ADT3 in 2 yrs., got 8 years thereafter with the 'junk' drug, and better off physically, etc.

Question everything is a good idea, experts don't even agree on alot of this stuff, must be a clue.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Thanks for the feedback,Bob. Presumably,inadvertently,you left a couple questions unanswered,i. e.,relative to reduced libido and impotence. Can you address this issue based on your personal experience and the experience of others who you know?
Also,how much coumadin? If these items were intentionally omitted that's OK too. I understand.
Also Can you provide more detail on the journal article including Vol. , No., Specific title. date. authors. etc, ?
Thanks again for the additionl information.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

I had my message get erased yesterday a couple times, when I pressed the wrong button on this machine (lol).

Coumadin is suggested and using blood clotting test called INR-Pro Time test will determine how many milligrams one needs to use. I used 2 mg even though at times INR results suggested going to 3 mg, I just never had issues with using 2 mg. I assumed that minor risk, I guess.

The libido thing I cannot assess, because my primary treatments of ADT3 over 2 yrs. and mega zap radiations on highest doseage of neutron and photon rays, could have ruined all that. So, I don't know how that would work out in someone else. Not my priority either, living and quality of life are my priorties period, anything else would be bonus stuff.

I would guess that estrogenic drugs, although starting out on a different pathway to PCa receptors, end up doing castrated levels of T levels and I had one not long ago a T level of 5 (lol).

Basically all these drugs currently understood and known work on certain pathways that effect SRC- PCa, thus these drugs fall into family types. Provenge being an exception in this mix. There are some 'junk' pathways in this cellular world twilight zone (it get very complex I wish I had a link to some Journal info I have read). They more recently found that their exists a few different estrogen pathways and an alpha and beta estrogen (prior was unknown). They also found out that, just how these estrogens actually work (alpha vs. beta estrogen) or on manipulations used to study them (thus far), more complex than they even guessed it would be. Even casodex seems to be a function of working to what your PTEN is doing, you can look into that term and that complex cellular world. It is way above our heads and pay grades (lol).

Vitamin D3 is excellent for blood and bone and immunity health. It is absorbed better than normal vitamin D. Testing to see where your level is by doing an OH-25 blood test, normal levels of non-cancerous patients around 25-30+, Dr. Strum says for PCa folks level of 80+ is a good idea. I did the OH-25 test and found using 6000 units of D3 capsules got mine up to 60 level, pretty decent level.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Thanks ever so much. One final detail, if you would be so kind and have the information available to you. In your initial response you referenced a Journal of Urology article favorable to DES. Could you provide the Vol., No., Month&Day, full title and author(s). Any of these factors may help me locate the full report.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Don,

Dr Gerald Chodak has written a book, published in December 2010 titled Winning the Battle Against Prostate Cancer: Get The Treatment That's Right For You you might ike to get hold of a copy and read what he has to say about DES.

He covers the dangers of high dose DES but emphasises that most of the problems are overcome when DES is delivered in what he terms a parentral route - by injection or absorbed through skin patches.

I managed to persuade my oncologist, against all his objections, to agree to my using DES after I suggested that he check on some of the studies published since his graduation on the subject since those were more positive possibly than the older studies - for the reasons mentioned by Bob. I wouldn't suggest this approach to anyone unless they have a good relationship with their oncologist!!

I have chsoen not to start with the DES right now, as set out in my latest update, but will almost certainly head down that route in the fullness of time.

All the best

Terry

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Interesting too Terry that studies showed the i.v. method to be useful in like 70% of all patients testing it in any PCa scenario. I did not realize that DES orally like I used is way less on the general hrpca and HT naivee cells at 24-28% effective. So, I could be very fortunate in my case for such long duration, with highly aggressive/risk stats from day one.

Dr. Myers considered DES somewhat a carcinogen, but that was found in females using estrogen drugs. I like Myers alot, just not sure he has enough evidence to prove this idea as a real risk in men with PCa, might be correct though. I do know my results and side effects over all the years, was real and tangible...as a patient results is huge, less side effects also huge, saving your bones in PCa likely priceless (for as long as that can happen).

My main point is that in PCa, not everyone responds to drugs the same, and you cannot possibly know with ut most certainty how you will do on a drug, until you try it on your own case. This can be seen in other patient histories, so something to consider if you have uncurative scenario.

With Zytiga now available without having to do chemo prior (as it was mandated before), will open up more useage among patients, for many it may work and may work better than Keto (even though Dr. Myers questioned that in his 2009 video, as to is it known to be better, we kind of assume it is).

I suspect MDV3100 (super casodex) to join in this same approval next year, and by pass the failing on chemo program they currently have in the Early Access Program being used by patients right now. Thus Zytiga will find a new competitor. I would welcome trying MDV3100 if I get the chance it binds to AR receptor better than anything invented, the odds of it working are high.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Terry
I will see if I can get a copy of Chodak's book.
Why is a good relationship so important for DES therapy?
Terry and Bob
Can you help me locate any recent DES studies that may be helpful?
Bob
I don't mean to be such a pest, but can you provide me more detail on the 2003 study you cited,e.g.,Vol.No., specific publication date, full title, author's
name(s)?

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Don,

I only mentioned the good relationship because it can be difficult to persuade some of the medical deities to even consider something that they KNOW is not correct. Medical beliefs are often not based on medical facts:-)

I don't think there are any new DES studies because the medical belief is that it is too dangerous and no better than other ADT drugs. Of course the dangers of heart related consequences idintified for low dose DES do not seem to be any greater than similar risks identified many years afte the adoption of the 'safer' ADT drugs, but......well that would clash with medical beliefs.

I'm posting one of the old study abstracts to start you on your hunt:

Low-dose oestrogen in the treatment of advanced prostate cancer

Br J Urol 1996 Dec;78(6):921-7; discussion 927-8 Related Articles, Books,

Experience with low-dose oestrogen in the treatment of advanced prostate cancer: a personal view.
Bishop MC.
Nottingham University Hospitals, UK.

OBJECTIVE: To re-evaluate the treatment of advanced prostatic carcinoma with diethylstilboestrol (DES) in low dosage in relation to the degree of suppression of plasma testosterone.

PATIENTS AND METHODS: The study comprised 106 patients with advanced carcinoma of the prostate (89 with T3/4 M1 and 17 with T3/4 N0/1 M0) who were treated with 1 mg/day of DES. The response was assessed clinically and by the change in plasma prostate specific antigen, prostatic and phosphatase and alkaline phosphatase, and plasma testosterone was monitored regularly. In a few patients it was possible to reduce the dose to 0.5 mg/day DES; in others, the initial response was not sustained and they were treated with an increased dose of DES or bilateral orchidectomy.

RESULTS: Seventy patients (Group 1) showed a sustained response to 1 mg/day of DES (0.5 mg/day in three) and 50 remained in remission at a mean of 21 months of treatment. Of the 36 patients offered secondary treatment, 12 (Group 2) responded with a second remission. Only 27% of patients had mean testosterone levels in the castrate range (0-2 nmol/L) but most in Group 1 had mean levels of < 10 nmol/L, whilst in 10 of the 12 patients in Group 2, the level was > 10 nmol/L. Overall times to progression and death were comparable with the results of conventional monotherapy or combination treatment and complication rates were acceptable.

CONCLUSION: Low-dose oestrogen therapy (1 mg/day of DES) is cheap, effective and caused few side-effects, none of which was life-threatening. In many patients, only minimal suppression of the plasma testosterone was required and the response appeared to be qualitative, although there was considerable variation in the threshold of response. A randomized trial of oestrogen, in a minimal dose adjusted to the requirements of the individual patient, against conventional hormone treatment now seems justified.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

I thought I posted that link prior:

http://ffyates.com/prostate/des.pdf (nov. 2003 J. Urology)

(old stuff: Complete remission w/DES: Journal of Urology 1955, 153 (6): 1944-5 (maybe at www.ncbi.nlm.nih.gov/pubmed/7752364 )

www.jurology.com/article/S0022-5347(05)62916-3/abstract (in my old notes??)

Dr. Premoli on estrogen patches & DES: www.pcainaz.com/Pages?ETE_eng.pdf

*docs make alot of money on LHRH drugs like Lupron and don't generally bother to go and look over all these 2nd line drugs, but might, but also oncologist do look at most everything for PCa control in their patients. Rarely will any hospital endorse using these drugs: eulexin, nilandron, avodart, proscar, ketoconazole, DES, emcyt, estradiol patches or gels, leukine,thalidomide, and some others. They do heavily endorse Lupron (mostly), sometimes casodex, definitively chemo drugs (very profittable too).
Watch some of Snuffy Myers videos on 2nd line hormone therapies, very enlightening as to what can be achieved in patients and himself with PCa still doing excellent around yr. 10-12??? now.

Re: How strange can HT therapies and results get? Just as strange as the disease-No Rules applies

Terry and Bob
Okay. Thanks guys.
Terry--I've ordered the book.

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