Advanced Prostate Cancer
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Nalakrats Returns From Sabbatical

Truth be known over the last 3 months while doing research, I did read a few posts, during my time off. Much of what I have been researching has nothing to do with Standard of Care. Involvement was focused on Out Of The Box subjects and thinking that may possibly be combined with Standard Of Care, or operate independently. A lot of focus went towards Dormant Pca cells, and men who reach and maintain long term remissions of many multiple years to then have a Bio-Chemical Failure, and whence this occurs, the downward spiral of the disease seemingly accelerates. I have gathered certain Meta Data, interviewed treating Oncologists, Etc.

For those wondering, my remission continues, and one interesting separate subject as to T, has been discovered and is being delved into, and I will Post on it as well as the subject of Dormancy. Picking up on a Post I did 4 months ago on Dormancy.

Being very refreshed I look forward to my return to activity on HealthUnlocked.

Nalakrats

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Welcome back

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Welcome back, Nalakrats. The cells you refer as "dormant" identified by the research community as tumor initiating cells (TIC) or cancer stem cells (CSC). Is this what you're talking about? ncbi.nlm.nih.gov/pmc/articl...

Btw, I just posted an update on my treatment a few posts below. I'm at the stage where I need to go after those pesky CSCs and looking for options.

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Yes and no---There is a phenomenon---of large numbers of men who pass from Pca after enjoying if that be the right word--a long term of many years in what is considered a remission. And the numbers might be higher if they did not die of something else.

Initiating, stem, and Dormant/hibernating/sleeping, may or may not be they same species. But then again they may. Anyway you look at it these non PSA emitting Cells, or Neuroendrocrine cells need to be targeted.

Nalakrats

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Gleason 9 in remission under Doc Myers more than 10 years. Now mets on the bones and on Xgeva. PSA still nearly undetecable.....what can I expect in the future?

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You are the reason I am researching right now Men who have had long remissions, and then fail, sometimes more than 20 years--and how to kill the Pca cells we cannot see or detect. Will be posting on this subject soon--it will be a series of posts, I suspect.

Nalakrats

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Very happy for you! Hopeful, too, even though far from undetectable (him). Looking forward to Nal’s series of posts. Mrs. S

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So very glad to see your post ! You have been in my thoughts. Can't wait to read more about your research. You rock !

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Welcome back; your posts are always a breath of fresh air.

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Good to have you back. I'm looking forward to reading your posts.

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Welcome back. Thrilled to hear you remain in good health :)

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Welcome back, Your helpful guidance has been sorely missed. Looking forward to hearing about useful alternative therapies, including supplements that help PCa.

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Great hearing from you and what a blessing still in remission.

Kim

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Welcome home! Very glad you remain in remission and; needles to say, your presence and knowledge was entirely missed!

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Glad you’re back. You were missed💕

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Glad you’re back my friend.

After my Lupron shot in July my psa went from 1.0 to .026. Recent bone scan showed Spots on pelvic area, throdiac vertebrae😪

Interesting note is Kaiser wanted me to also start taking zytega even though my psa dropped. I got a second opinion from UCSF and they said don’t take the zytega.

I decided to change clinics. UCSF Cancer center is now my new health care provider. My first appointment is October 8th.

BTW my testosterone level after the lupron injection is 12 😒.

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Were the spots positively identified as Pca? If so, suggest 2 tests---one for Alk Phos. and one for Chromogranin A---lets see if bone is being destroyed, and If there are any Neuroendrocrine Pca cells active. The PSA being so low or what would be considered undetectable, makes a mystery out of this. So lets check some blood markers.

Nalakrats

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The spots on my bone scan showed up when my psa started to creep up to 1.0.

In 2012 I was diagnosed with PC Gleason 7

After the robotic surgery there were a few cells that travelled to a limphed node.

Then Imrt radiation with two years of lupron.

From 2013-March 2018 I was ND psa.

The spots were not identified but UCSF will probably check when the Lupron wears off in January 2019. I’ll ask about those two tests.

Thanks again Nalakrats

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Sad about those spots, but very interesting about your new clinic. Waiting to hear about your appointment yesterday—same date as my husband’s third bone scan. Scary waiting for results. Distrust occasionally misleading PSA and am curious about the relative evils of black vs white spots on the scan. I know the white ones are about absent blood supply. We have two radiologists in our extended family. I should get up the gumption and ask them! Go well. Mrs. S

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Welcome back nalakrats!! Looking forward to reading your new posts!

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Welcome back !

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Yeah!! I'm so glad you are back and doing well.🙏👏👍

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God bless you Nalakrats! May your Psa be non existent and may you live and love in happiness..

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You’ve got a lot of folks praying for you. Including us always... peace on this fall day!

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I Pray every day For the whole group--as there are so many of us.

Nalakrats

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Outside of the box combined with proven is what it takes to win this war. Your insight is a welcomed force to have with us again. Thanks Nal for coming back.

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Amen!!

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Woo! Hoo! Welcome back! 💫

James

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Welcome back Nala!

I noticed that Gus Gold was silent while you were away. If he starts up again it will prove my theory that Gus is your alter ego. How else did he obtain those family photographs of you?

Best, -Patrick

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I spoke with Gusgold---his status is the same---on Xtandi, plus his own recipe of supplements---just got burnt out with this group.

Nalakrats

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How does your supplementation regimen compare to his? What are your top choices for members of this forum?

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I have a lot of tried and believable supplements, that I have used, and subtracted and added as new info becomes available. Sorry, but if you read Gusgold's Posts, he speaks of those that he uses. Give me your list and remind me where you are in your journey--as I have been away awhile. Need your Current Pca Medical Status, and also that at the time of DX, which is obviously different.

Nalakrats

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I was diagnosed with stage 4 metastisis to the pelvic bone (5 lesions) in June 2018, with Gleason 9/10 and 11 out of 16 cores positive via MRI fusion guided biopsy. Now on ADT with Eligard, Zytiga, Prednisone and Xgeva which has resulted in PSA down from 20 to 0.32 and AP down from 248 to 90 so far. Participating in SIMCAP clinical trial at CINJ, with standard of care HT and upcoming robotic prostatectomy Nov 14.

Taking several supplements including calcium citrate (Prosteon), Zyflamend, LE Immune Senescence, Green Tea CR (Purity Products). D3 5000iu, Pomegranate extract 250 mg, Turmeric 1000mg, Lycopene 40mg, Ashwagandha extract 500mg, Omega 3 fish oil 1360mg, Gaba 750mg, L Theanine 200mg with Valerian extract 100mg, liquid Qunol CoQ10 100mg, probiotics 20 billion.

My Oncologist is concerned about any potential negative reaction with my current ADT therapy. I have been reading about the benefits of citrus pectin and AHCC, but have my yet ordered any.

Looking forward to your guidance.

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Similar treatment here although just starting Xgeva this month. Some of the same supplements although we haven’t taken LE’s CoQ10 recently. My husband persists in taking the Pecta-Sol (Amazon) even though it’s costly. Good question for the returning Nalakrats, and, as always, you can see he’s ready to respond. Aren’t we lucky! Mrs. S

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Welcome nalakrats!!

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Welcome back

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Welcome back and congratulations on still being in remission! Although I lost my husband in December to CRPc, I continue to watch posts and learn as our son’s PSA is fluctuating. Praying he isn’t going to follow in his Dad’s and Uncle’s footsteps in this regard but if he does we want to catch it very early and pray for a long, gentle remission. Thank you for sharing what you have learned! Our son will be 52 in a few days. All the best to you for a long, long remission.

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I hope you have your Son Gene mapped, as with uncle and dad, familial Gene Mutations might be obvious---in my situation, had a Grandfather, 1st Aunt, myself and brother, and I do not know how far it goes back. But we did find the mutations BRCA-2 and PTEN.

Nalakrats

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Thank you so much for this. I will tell him to have it done even if I have to pay for it myself. His Urologist wants to check him again in a year. I wish they’d do it every 6 months but his psa had dropped to 1.8 from 2.8 six months earlier and from DRE his prostrate was no longer enlarged. Don’t know if it matters but also my husband’s mom had breast cancer. She was in remission when she died. Thanks again! I appreciate this!!

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If insured or on Medicare---> free. You can check with Foundation One---their 800 number is on their web page --if you have insurance, they can walk you through, costs--they answer phones quickly and they are all patient advocates. The mapping identifies the Mutations if any--and identifies any targeted drugs now being used against those mutations, and where clinical trials are, as to the mutations, and you get updates, thru a portal as new drugs or treatments arise. 328 genes are evaluated, and today---as I had mine done about 30 months ago--I believe they have added other things like PD-1, and other markers. It is a cool call to make.

Nalakrats

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Thank you!!! 😊

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Your husband's mom having breast cancer is a major indicator and your son need to undergo genomic testing immediately for something like BRACA2.

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And so it begins, again. I look forward to the spirited debates that are inevitable. Welcome back!

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Welcome back🤗🤗

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Welcome back!

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Welcome back, Nal. Missed your posts and sense of humor. Glad to hear the time off refreshed you!

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I am a bit older--but stronger from the gym work--which I had more time to use. Going to post a picture one day--show what a 75 year old should look like--Ha-ha.

Nalakrats

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Echoing all the good vibes to you- hope your good status continues- I continue to learn from you for my hubby

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You bring "HOPE" Nalakrats 💗

So glad you're doing so good.

🤗Jackie

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Happy to see you back! I sincerely thank you for your help even while you were on sabbatical! Apologies if that have taken much of your time. May you continue to be in remission! All the best and God speed!

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Very happy you are well and thank you for taking the time with me even when you were on sabbatical. I am my dad’s advocate and couldn’t be as strong or supportive without the help from you and many others. Continued health and blessings to you.

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Great to have your back. Looking forward to hearing your latest contemplations. Always interesting. This forum missed you. Wondering if you came back because you missed this forum a bit? I Hope so.

Schwah

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No I intended to come back after taking a three month shut down.

Nalakrats

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Welcome back! If you ever visit busy UK on your travels we can give you a good time and introduce you to some of our leading London based Oncos and of course to the birthplace of Twickenham Twinings. No charge for staying, your messages have been a great divertissement for me and hundreds if not thousands of our fellow travellers. As long as you don't drink Saluki blood!

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Glad to hear you enjoyed your time away. Good for you! The forum has been a little lackluster in your absence. We all look forward to your clarity and logic as do I. You have a way of sifting through the madness and providing a calm and common sense approach. You are a blessing to us all. Stay well.

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Welcome back!

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Enthused that you're back...and thankful that your remission is quiet. Greatly appreciate your research and enlightening contributions. BRAVO!

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Welcome back, I'm glad to know you're doing well !!

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Welcome back and may Hashem continue to protect you.

You mentioned T : had interesting discussion with my onc regarding my supra T level which seems to coming from my Xtandi therapy, despite the very low dose I am on. Seems he now has few others that also drifted to him from dr Myers who are on this same therapy and apparently are doing well. Apparently, dr Myers developed this approach towards the end of his practice. When you have a sec would like your view of this phenomenon.

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We are not alone---as other men are reporting into me about their unusual High T, while in Therapy or on a vacation.

Shalom,

Nalakrats

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WELCOME BACK!!! You have been missed! Glad to know that you are doing well. Look forward to the return of your insightful input.

Hugs and prayers.

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Welcome back

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Glad your back and still in remission! Always appreciate your wisdom!

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Welcome back, Nal. I hope the time off from here let you do some of what makes you happiest. I offered small prayers for you as time went on. Thanks for all you do for all of us here.

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In everything here the most that I appreciate is prayer---thank you.

Nalakrats

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Welcome back!!!!

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Reprint from Thursday 10/04/2018 4:53 PM EDT .....................................................................................

Well, welcome back "star kalan".

Kalan

(Urban dictionary)

A short guy with brown hair. Kalans can be very annoying, and crazy. A Kalan is very romantic and will do almost anything for the lucky girl that can call him her boyfriend. A Kalan is an amazing person and thinks of others before himself. He is smart, cute, funny, and will cheer you up when you are feeling sad. A Kalan can put a smile on your face on your worst days.

Good Luck and Good Health.

j-o-h-n Thursday 10/04/2018 5:26PM EDT

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Welcome back also Nal, your sound advice is much appreciated

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Hello Mr. and Mrs. N,

Les is reading you on the iPad as I am pecking one-fingered on our iPhone 6.

My blood pressure has dropped precipitously (even though I never take it) knowing you have returned. I wish l could give you the answers to your inquiry for once.

We, meaning he, has a third bone scan in a couple days and begins Xgeva at the end of the month. Our specialist has reduced the Zytiga and prednisone by half. The only side effect I notice is a puzzling, insatiable appetite without weight gain. His nearly 80-yr-old body wants to keep chugging.

We'll follow you. No need to write. Sad about Deb and worried about Dan59. Mrs. S

P.S. We watched the movie "Creation" about Darwin and his wife's attempts to reconcile scripture and science. Liked the movie and the reportedly happy middle-aged couple playing the leading roles.

Hope you both have less insomnia than I do. Love and forever appreciation from us both.

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Some THC[tender hot cuddling], can get you to sleep. Bet some people were thinking I had something else, in mind.

Nalakrats

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We need a site for those of us nearing or post age 80. It’s not that there is no physical closeness when nighttime isn’t hot. We were born nine months apart. How hot am I?! What I’m concerned about is the loss of mental compatibility, i.e. explaining things one never had to explain before as the result of APC treatment. So far, we’re doing well, but the cloud of mental separation looms. I want to know if anyone’s post-Lupron or other ADT drugs improves memory but am fearful of the demands of posting. Mrs. S

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Yes I can assure you that I at 75 and post ADT, that my mental acuity--has mostly returned---what I was left with is occasionally wanting to say a word, and I cannot find it---but my mind quickly uses a synonym, or a replacement---I do public speaking, so I am aware of it.

Nalakrats

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Just found this. Great! There is hope, that is if using Estradiol gel instead of the proposed six-month Eligard. Also I agree with your ideas about which treatment options remain and look promising. I will share them with our Web MD prostate cancer expert who is always exceedingly busy. First Xgeva injection is Oct. 26th. Thanks again. Happy you are well and have returned. Mrs. S

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I would not go near any Estradiol, external or foods that create it---you have not seen all the arguments on this subject--one such is that those men with low T have high E2 when they are DX with Pca---and that a study was done at Memorial Sloan in NYC--in 1978--with 260 cadavers--all died of prostate cancer---all prostates were removed and the most prominent, chemical that did not belong that was identified, was the Hormone E2[Estradiol]--the researches in there write up---said they thought they were looking at female tissue--instead of male prostate tissue.

Check with pjoshea13, who has written often on this--or better yet Get Dr. Friedman's book from Amazon==Prostate. Breast, Cancer, and Alzheimer's He identifies E2 as the main culprit in the disease process.

Nalakrats

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Do You have any other evidence besides that 40 year old study from MSK, that was when most men were either on pcspes or DES as it was really the only treatment then besides orchiotomy,and possibly had some e2 for that reason. Lupron was approved 20 years after that MSK study in 1998. Many men I know had great responses to estradiol,including me in stage 4 metastatic added to zolodex, and it is surely easier than lupron. Myers was surely a fan.

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By Dr. Friedman's Book Prostate Breast Cancer and Alzheimer's--He is a Molecular Biologist who has studied this for 30 years and wrote a book that has over 300 bibliographies, and he gets down to the proofs on E2.

My E2 is measured every 30 days and I am down at 20---> would love it to be about 16-18. I have kept this for about 3 years--I won't even eat a Yam--as it has phyto-estrogens, that can be converted to E2 by the body. I use Proscar, Avodart, DIM, and Arimidex, all used to prevent my T from going to DHT and E2. I am not on Pca ADT drugs with a T as of last week of 758--and a free T in the middle of the range.

And doing this at age 75. I was on ADT for 2 years and after getting to Undetectable in 2 months, after 22 months on ADT I went on Vacation, and I am still holding, with my T coming back to levels of a 30 year old---and I will not let my T, metabolize to E2 as it gets used up and tries to exit the body. Not on my life.

Yes there is an argument and there are 2 sides---I will give you that, and there are many that follow what you do--but I must follow what works for me---Buy Friedman's book at Amazon---my Uro, and I are giving a Paper in April at the Southeast Urological Society of America--and guess what the subject is going to be on----? Yep--Controlling DHT and E2, while on ADT, and while on Vacation to Achieve Remissive Results.

Nalakrats

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Actually control T and E2 while on ADT? Even with T at very low numbers? Is there another source of DHT and E2 besides T?

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Control DHT and E2, While on ADT---Dr. Snuffy Meyers almost always had his ADT patient on Avodart--which prevents T--->DHT, and T and DHT via another pathway to E2.

Idea that Androgen receptors have an affinity for DHT and E2,--and they would use them as they use T. We never want to get the E2 too too low as we need some for bone health--if you are not using a multi-supplemental bone enhancement program. But if possible we for sure we want DHT at undetectable values.

All this above is in my opinion. Works for me, and many others.

Nalakrats

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Thanks. I presumed that with a low T we did not have to be concerned about DHT or E2 and the Avodart etc were for later. In other words, no Or very little T, no DHT.

BTW, I am very glad you are doing well. It is inspiring and encouraging for all of us. All the best.

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pjoshea13--in many of his posts explains the ability of Pca cells to take circulating fats, convert to cholesterol, or take cholesterol swimming in our blood and by a certain Bio-Chemical pathway, convert to Testosterone. Not all ADT turns off T production--we have the Adrenals, which Zytiga I believe can be shut them down. And surprisingly--I posted I think about 6 months ago that studies found that the Hypothalamus--part of the brain, can somehow produce a surge in E2--this total Hormone subject--is not all understood to this day, after 40 years of research. We just know that Pca cells be them in the cells membrane or internal, that T, DHT, E2, Progesterone can all be used, by Pca cells.

Nalakrats

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We will read Friedman. Believe it or not, I am aware of the retrospective study of those cadaver prostates high in E2. See comments in a message I will post to you regarding distinctions made by Patrick. Don’t recall where. Mrs. S

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Welcome back. Hope you enjoyed your time off. 👍

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I needed the rest from the 4-5 hours a day on this site--while off, I got to enjoy the summer, and do some targeted research, which I will be posting on this Fall. Life cannot always be about Pca.

Nalakrats

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We are anxious for your upcoming post on your latest research. Please don't wait too long, as you well know we are all on borrowed time.

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Its complicated--trying to put things in common language---and another poster filled me up with 10 more research papers, I have to read, as he was in my pew for what I am working on--there will be no major pathways to cures.

Nalakrats

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Your efforts and wisdom are greatly appreciated.

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I totally agree. 👍

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Link to Friedman's book for those who are interested. Worth getting and discussion with your MO.

amazon.com/New-Testosterone...

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Thanks for the Post. I have my Urologist reading my copy now.

Nalakrats

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Already reading. Looks good. Thanks to you and Nal. Isn’t technology great sometimes? This Post and all the replies were so enlivening.

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Nalakrats deserves all the credit for bringing this to our attention. I just posted the link to facilitate for the group.

It is indeed an interesting book and makes sense to me. Yet, as previously discussed, there are other well-regarded MOs who prescribe estrogen/estradiol to manage PCa. Hmmmm.

About six years ago my daughter got leukemia. The MO said "the good news is we know how to treat this - no debate. The bad news is you are young and strong and we are going to kick your ass". It wasn't pleasant, but she is cured (knock on wood).

I hope for that day with PCa. I would take a good ass kicking if there is light at the end of the tunnel, but it seems for this disease we are going through treatments and not even sure if we are doing the right thing. It should would be more comforting if there were a single definitive solution for PCa, but life is not that simple.

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Thanks for replying. Our MO did prescribe estradiol patches for Les which he stopped using after breast tenderness and minimal gynecomastia occurred. Still, I’m ready to try most anything to replace Vantas now that the year is over in order to gain back some of his mental acuity. I also blame myself for not moving ahead with Foundation One, as Nalakrats instructs, without waiting for urologists to expedite genetic mapping. How much experimental treatment to encourage that causes anxiety, pain, and tremendous costs is another issue. Certainly, one doesn't want to endure those without knowledge of any mutations that could help determine selection or elimination of drugs. Obviously, you are well versed in all this. We’re thrilled to hear about your daughter’s remission and, we pray, cure. When my brother was in the last stages of brain cancer at Mayo, he saw many children in the process of treatment and wondered how the medical staff could bear watching their suffering. Tell your daughter we’re sorry she had to endure that. The bone scan process went well for Les yesterday. One stress over—except for the results. Mrs. S

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Welcome back Nal, I look forward to your posts and comments.

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