zufus
New Member
PCa is like the Twilight Zone, can be stranger than fiction....
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Post by zufus on Jan 26, 2014 13:48:58 GMT -8
Met Doug Ferraro at local specialize PCa group here in Michigan years ago now, he goes back a number of years and was friend to Harry Pinchot (PCa advocate award winner years ago) and helped him with some questions given to PCRI docs event. His story is listed in www.yananow.org (search by name to read it all) also his protocol he came up with is published in the Paact Newsletter last year (see www.paactusa.org for pdf download files to read or subscribe to their good PCa magazine run by Rick Profit another PCa Pinchot award winner).
You must read for thy self so as here his words directly. The great news on his concept, is he studied it for 2 years before acting upon it and this is not a know protocol as far as I ever saw. He was at the last PCRI meeting and talked to the PCRI docs at the event, not many knew what to think or say about his concept, however DR. Myer's heard him out and did respond with some interesting thoughts on it. Of course Dr. Myers being a PCa patient and also pioneer makes it more understandable.
Here is the news, Doug has done this protocol for 1 year now with excellent and better than prior results over his whole PCa journey. It is low cost, thus cheap and little to no side effects (lol- no wonder it will not be overly welcomed). It doesn't work for just anyone either, I tried it with no seeable results via psa and blood tests, but had no side effects. My problem is high risk scenario since 2002 and in the last 12-16 months psa getting out of good control, so no wonder it didn't work. Others have now tried this even in foreign countries and some are saying results are shown, others none.
Doug's shortened story, abnormal psa way back like 1998 or so, years later did RP and then SRT (salvage rad.), then PCa various drugs and psa minor rises (he would switch drugs asap in those scenarios). He was a Gleason 9 by the way, I don't have his psa number but maybe 6-8 when RP happened.
This may work for some guys with lower psa and tumor volumes and reasonably low T levels, etc. He does have thoughts on that and may be in the yananow journey experiences/mentors postings.
I guess I just want to say keep hope alive and look at anything and everything, simply because the medical folks don't have all the answers, plenty of arguments on PCa anything issues (screening etc.) Even Harry Pinchot as he told unto Doug, become your own advocate and learn all you can. Even though we have some inspirational type wise docs out there, many in PCRI of course (many of us cannot access them via distance), my mantra for others (via 12 years experience and I always question things)= question everything and all the time, seems to hold up on PCa issues all this time. Good luck in fighting this dragon...even if you cannot win....die trying or make your decisions on quality of life and your course to walk, as only you the patient walks the walk. I love guys like Doug whom find new pavement for others to travel in the PCa jungle. (little tribute to Mr. Robert Young our first PCa dictionary for laypersons inventor, years ago) Peace to all hearts...
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Post by Tony Crispino on Jan 26, 2014 16:55:46 GMT -8
Here is Dougs StoryHere is a brief bio on Harry PinchotA couple a great guys there. I have another of the truly great advocates stories right here: Bob Parsons Thank you for joining Bob. Doug's story is impressive. It is always helpful to read such success. Ha. And I see you took advantage of our modernized forum engine and posted a great profile picture. Again Welcome, Bob! Glad to see you always! Tony
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Post by Allen on Jan 26, 2014 17:20:39 GMT -8
I'm confused. What's the protocol? I didn't see a protocol on the pacctusa.org webpage.
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zufus
New Member
PCa is like the Twilight Zone, can be stranger than fiction....
Posts: 2
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Post by zufus on Jan 27, 2014 3:30:45 GMT -8
Thanks Tony, wasn't sure you would welcome me or my newstory on Doug's protocol. I admit I'm more in the controversial issues of PCa, so as to help make others question things and not just accept the status quo of which I have seen change numerous times in the last 12 yrs. (e.g. psa concern levels, now screenings, scannings worthiness, etc.)
I will try to be the good dog I usually am and not get to controversial, but if I ever do get beyond 'hormone therapy' on heated issues (lol), feel free to handle in whatever fashion needed.
Allen: basically it is using FDA approved drugs of 1 mg. (or .75) of Dexamethasone & using estradiol patches .1 mg 7 day type (maybe using 2-3 of those, see Doug's gig). Doug seems to contend that Dexa drug does in fact lower DHT a lot (which is your own conversion of T level into a more potent form, that PCa seems to love) and Prednisone does not have this pathway (he tested both and has the numbers to prove it). He was failing on drugs like Lupron, casodex, estradiol patches or estradiol gel, proscar and such. He watched PSA levels like a hawk, psa tests very often so never let it get above 2.3 or so. His protocol dropped the 2.3 to .007 (ultra sensitive testings), this phenomena of a Gleason 9 patient and rising psa's on those prior drugs and getting this type of response thereafter, is something I never heard of prior!!!! (Dexa 1 mg= approx. 6.6 worth of Prednisone, but they are not comparable on DHT effects)
As for my PCa fun history, amazing how after failing ADT3 actually in less than 2 yrs. post radiations of Neutron and Photon rays (two machines used-via Karmanos Cancer Inst.), I did excellent on an old school protocol for about 8 years thereafter (love having a doc whom has very open minded thinking and he went to school in Canada with Dr. Labrie years ago), then the dragon changed and morphed into more fire breathing lizard we all hate and the fight continues to this day. I really enjoy seeing laypersons pay it forward and add something meaningful to others whom maybe very scared and feel alone in fighting this ________.
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Jerry
Junior Member
Posts: 44
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Post by Jerry on Jan 27, 2014 16:47:03 GMT -8
Hey Zufus,
Welcome...Hey, is that dog on ADT3?
Always enjoy and learn from your posts.
Jerry
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Post by lowroad on Apr 8, 2014 1:54:31 GMT -8
Hi Zufus, Tony, Allen, Jerry and all the other guys here, this is LowRoad from Germany. I join this forum because I am very interesting in estrogenes! But first of all my story: Diagnosed Feb-2009, PSA:25ng/ml, T3a, Nx, M1b, GS:5+4 Therapy: ADT3 + HDR-Brachy + EBRT + EBRT to the bone Mets + Zometa Going intermittent after 2 years of ADT3 with a PSA of 0.01ng/ml, switch from Zometa -> Denosumab Start 2nd ADT3, after 18 month in off phase, at PSA:5ng/ml, but PSADT ~2 month! Stop Denosumab to restart bone remodeling (I am very concerned of ONJ), add one 0.1mg Estradiol patch twice weekly, E2 level in upper normal range (<40pg/ml), 0.25mg Dexamethason daily. PSA drop from 5.4ng/ml -> 0.1ng/ml within 4 weeks, below 0.01ng/ml after 4 Month, undetectable (< 0.008ng/ml) after 5 month. Bone resorption marker bCTX goes up after ~7 month off Denosumab and stabilized in a midrange since then. Bone-specific-ALP alway in normal range. 2nd iADT3 ended Dec-2013. To get Testosterone up fast I switch from Estradiol supplementation to Estradiol depletion by using an AI (Anastrozole) plus an ER-alpha antagonist (Toremifene). Worked for me, T up, E2 low. Currently PSA still undetectable and T ~3ng/ml, E2 ~10pg/ml (but DHT a bit too high – I am working on this). Estrogenes:
I prefer Estradiol Patches over DES capsules because of the blood clotting complication you may run in. In combination with low dose Dexamethasone it worked very well in about 50% of patients, this is what I can confirm. In my opinion the response to Estrogene therapies might be dependent on the TMPRSS2-ERG mutation status: www.medpagetoday.com/Urology/ProstateCancer/9636www.ncbi.nlm.nih.gov/pmc/articles/PMC3123299/“Follow-up functional studies corroborated the regulation of TMPRSS2–ERG expression by oestrogenic compounds in a non-androgen-responsive prostate cancer cell line harbouring the fusion….” (Chandan Kumar-Sinha , Recurrent gene fusions in prostate cancer, NATURE Reviews CANCER, July 2008, P498) Open for discussions!
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Post by Tony Crispino on Apr 8, 2014 11:48:11 GMT -8
Lowroad thank you much for that input. Our friend Zufus here is an excellent example of a DES user. He knows way more about it than I do. He did well for a long time but he is now on Zytiga and has advancing disease.
Again thank you for the post. Stay well.
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pdl17
New Member
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Post by pdl17 on Apr 9, 2014 16:54:22 GMT -8
Zufus,
Did you have any of the notorious side effects of Lupron/Casodex on the patches plus Dexamethasone, such as hot flashes, brain fog, gynecomastia, etc. Did you gain much weight? I am a pharmacist and find this very interesting.
Paul
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Post by Tony Crispino on Apr 9, 2014 19:22:30 GMT -8
Paul, If he does not respond in the next day I'd send him an email. I can get you guys hooked up so let me know.
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