MONOTHERAPY FOR NEWLY DIAGNOSED PROST... - Advanced Prostate...

Advanced Prostate Cancer

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MONOTHERAPY FOR NEWLY DIAGNOSED PROSTATE CANCER

RICH22 profile image
33 Replies

Also, I am not a doctor nor an expert on anything. Respect for the medical arts and science is hard-wired into my DNA. However, I have frequently dropped doctors who can't answer my questions and became intimidated thereby. Hence, you are cautioned that my chosen Treatment Plan is not "establishment approved." Further, this post is not intended to be an Introduction to PCa but will include some abbrevs for common terms. Again, monotherapy is NOT suggested by anyone. I'm 73 and can afford to be a guinea pig.

And now, the next Episode of Game of Stones... (I humbly suggest you read my post "Upcoming appt. with urologist").

Good news/bad gnus

Yesterday I met with the top-shelf urologist here, not board certified oncologist but gladly shared what he knew about PCa, unlike uro-oncs I've wasted time with. After a few minutes, it became apparent I'd already covered most of the same area he had. Please ignore the " " below -- they're literary enhancement only. I wasn't able to record the consult for reasons explained below; none involved the good doctor refusing me.

Dr. K was amazed that I'd gone almost 2 years with a PSA <0.1 on casodex and finasteride. I failed to inform him of the ton of vitamins, supplements (both mineral and herbal [NOT CBD, ever!], minimal exercise, fresh air and 40-60 oz. distilled water/day). Then he mentioned that the efficacy of RadioTherapy (RT) diminishes radically if/when I go Castrate Resistant (CR). Testosterone (T) is the main meal for PCa, mostly produced in the testicles. Castration can be done physically, hormonally or chemically.

"Why should that be," asked I. "Just because the PCa cells have mutated (again) doesn't mean they're not still Ca, still lose reproductive ability when radiated."

"Mutant CRPC cells are more aggressive, more likely to metastacize," sayeth he. I did not know that, nor accept it without further research, as inclined as I am to believe Dr. K. Nobody gets everything right all the time, not even egomaniacs who think they do.

The "once the horses get outta the barn" thing (PCa cells escape the gland's "capsule") is among the first fears you develop after Diagnosis (dx), if you were lucky to have found out soon enough. I won't tell you of the guy in the PCa support group I attend, who had two PSA tests <2.4, went for MRI scans anyway, which were negative, then bizarrely went for a Biopsy (bx) and whammo, GL 4+5, metastases (mets) in Seminal Vesicles (SV). But I digress.

"As you know," continued Dr. K, "Much decision-making for Treatment (Tx) involves Risk Assessment (RA). IMHO, the potential damage of staying on casodex/finasteride is about equal to potential damage by RT." And all by itself, this line of reasoning + professional experienced opinion made the consult worth its weight in gold (metaphorically speaking).

What I came away with was: 1) supreme relief at finding a doc I trust; 2) as in ALL of life, it's a crapshoot; 3) Dr. Fernand Labrie, may God rest his genius soul, was tracking the least invasive Tx for localized, non-mCRPC via Combined Androgen (Hormone) Blockade (CAB, CHB). I'll roll the dice on that, rather than on RT.

Since I'm only using casodex (bicalutamide, which blocks PCa cells from UTILIZING testosterone), not combined with a Testosterone (T) PRODUCTION blocker (T is grrrreat! for almost all other organs, esp. my BRAIN!), the next step could be blocking T production as well, which I remain loathe to do.

Hormone Therapies (HT) to block T include a Luteinizing Hormone-Releasing Hormone (LHRH) agonist. As of Dec 18, 2019, LHRH agonists available in the US include: Leuprolide (Lupron, Eligard), Goserelin (Zoladex), Histrelin (Vantas) and Triptorelin (Trelstar). An LHRH agonist keeps testicles from making T by blocking other hormones needed to make it. Also called Gonadotropin-Releasing Hormone (GnRH) agonist.

I'm gonna stop here, having discovered interesting mis- and maybe dis-information on the Am. Ca. Soc. website, along with good info... which is typical all the hell over the internet. C'est la CyberSpace.

Oh yeah, why I failed to record the consult. In my last visit months ago to this particular med. grp, my cell-phone's voice recorder went kerflooey. I chalked it up to coincidence, that as soon as the appt ended, the voice recorder came right back on. This time, I wasn't so lucky, even though I hadn't used the damn thing! Not only did the voice recorder die, the entire phone's now dead as a doornail.

Stay in the fray, brothers. Do more homework; this shit never ends.

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RICH22 profile image
RICH22
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33 Replies
cesces profile image
cesces

"Anyone having a problem with that should take a long walk off a short pier. "

I wouldn't worry about that. We had too many sections. You can still ask the same questions and get the same answers.

RICH22 profile image
RICH22 in reply tocesces

the reason i sound a bit perturbed was that someone mentioned that this group was for advanced cancer and that my case did not exactly fit the standard profiles. anyway, thnx for the reply.

cesanon profile image
cesanon in reply toRICH22

Post whatever you want. You will get responsive answers.

addicted2cycling profile image
addicted2cycling in reply toRICH22

I was asked about having mets with my first post being GL10 diagnosed/treated and replied with a "not that I know of right now" already having had an Axumin just 3 years after initial 2015 treatment that showed some return in bed but no mets and then another Axumin a couple weeks ago due to rise in PSA and this time all was clear BUT a Ga68 or an 18F-DCPFyL might have shown differently.

I'm taking what comes my way with a GL10 dx then CASTRATION then Cryoablation then an Immunotherapy injection AND THEN put on T injections bi-weekly all allowing this soon to be 70yo Unique Eunuch TO CONTINUE 100+ mile/day bicycle rides 1 to 3 times/week, marathons and half marathons until recently when my bone on bone knees prevented my walking the distances and then comfortably bike after. A treatment plan that is contrary to all things common sense BUT my life is pretty good and if my choices have shortened it some, GUESS I'm taking a shorter walk off an even shorter pier BUT enjoying every step/crank rotation before the end.

RICH22 profile image
RICH22 in reply toaddicted2cycling

the immunotx inject. was done where? yervoy, keytruda and opdivo together? looked all that stuff up couple years ago, seemed to The Answer... then came the peer-reviewed studies, the ACS involvement and whammo, the two docs promoting it were vilified and the whole idea went kerflooey... until revival recently... or maybe i got it wrong. it's this damn dunning-kruger thing.... and the LSD.

Seriously would like to know which immunotx and where, bro.

addicted2cycling profile image
addicted2cycling in reply toRICH22

Currently not at liberty to say which 3 drugs until doc gives me the OK (need more time being clear) since with the addition of the Testosterone injections really is contrary to standards.

Darryl profile image
DarrylPartner in reply toRICH22

Rich, the group exists and is called Prostate Cancer Network you are welcome in both communities

RICH22 profile image
RICH22 in reply toDarryl

the group i did find was this, with this notice:

This community is no longer actively moderated. Please visit the other prostate cancer community to continue receiving support: healthunlocked.com/advanced-prostate-cancer/posts/138237903/welcome-new-members

But thnx to your link found the other group that is still going strong. thnx again

Darryl profile image
DarrylPartner in reply toRICH22

You can post in the Prostate Cancer Network community

RICH22 profile image
RICH22 in reply toDarryl

thnx darryl but i was talking about other PCa groups HERE in HealthUnlocked. there are none but this one. i googled Prostate Cancer Network and found a cancer network with a blog that shows no community. a link would really help.

Darryl profile image
DarrylPartner in reply toRICH22

healthunlocked.com/prostate...

cesces profile image
cesces

Your level of confidence that you understand this disease causes me to be concerned that you might be under the influence of what is called the Dunning-Kruger effect.

There is a lot to learn about disease. You might do better by proceeding with more humility. Honest.

There are a lot very knowledgeable people here. Some better than docs in my opinion.

RICH22 profile image
RICH22 in reply tocesces

yeah, i got a massive ego and totally incompetent to figure anything out. dude, i only share my opinions. With cancer, NOTHING is 100% certain, which i have stated many times, esp. to anyone who claims anything IS 100% certain.

i got as far as organic chem, blasted away by the complexity of just a simple living cell ! now imagine how many orders of magnitude must be the number of interactions of a few billion cells in the whole body... then add cancer's ability to mutate! no, no one can convince me they know it all, especially the guy in my mirror.

as for humility? not gonna happen, amigo! lol i got a bad attitude and i'm bringin it with me to the grave.

j-o-h-n profile image
j-o-h-n in reply toRICH22

She has one too..... so would you please take my ex-wife with you...........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/15/2010 1:20 PM EST

RICH22 profile image
RICH22 in reply toj-o-h-n

ok henny -- done!

so this guy walks into a bar and goes OUCH!

j-o-h-n profile image
j-o-h-n in reply toRICH22

Thank you...

so this guy walks out of a bar and says " holy chit it hurts in there"....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/15/2010 7:32 PM EST

RICH22 profile image
RICH22 in reply toj-o-h-n

so this guy walks into a bar, orders a beer and sandwich. Bartender brings them, a little guy 9 inches tall hops outta the guy's pocket, kicks over the beer, goes over to the sandwich, opens it and pees all over the ham and cheese. runs back up the guy's sleeve to his pocket. Bartender's eyes open a bit. Guy reorders the same things. Again, the little guy slides down the guy's arm, kicks over the beer, takes a dump on the sandwich, jumps back in the pocket.

Bartender says, "What's going on here?"

Guy says, "I found a lamp, rubbed it, a genie came out, told me i had one wish, reward for freeing him. I asked for a 9-inch prick.... "

j-o-h-n profile image
j-o-h-n in reply toRICH22

Wow I found that same lamp and I wished that the genie would give me a huge prick... so he set me up with my ex-wife....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/16/2020 8:12 PM EST

RICH22 profile image
RICH22 in reply toj-o-h-n

So this guy carries a huge heavy box into his sweetheart's birthday party, plops it down and wishes her a happy birthday.

"What's that?" she asks.

"It's what you wanted," he replies.

"But all I asked you for was a box of ping pong balls."

"Ping pong balls... Ping pong balls!?" he says, "Oh my God, I thought you said King Kong's balls!"

j-o-h-n profile image
j-o-h-n in reply toRICH22

LOL.....Now the sweetheart has to install a doorbell that alerts her by getting King Kong to sing about the game of table tennis in Hong Hong. It's called "the King Kong Ping Pong in Hong Kong song about a Ding Dong".,, I guess I'm dong for now....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/18/2020 5:26 PM EST

RICH22 profile image
RICH22 in reply toj-o-h-n

i think we've milked this cow to empty dry forever. Next!

j-o-h-n profile image
j-o-h-n in reply toRICH22

Agreed.... Let's not udder another word..............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/18/2020 7:15 PM EST

cesces profile image
cesces

There was some statistically based research a while back, that determined with cancer and similar agents that multiply similarly, it's most effective to hit them hard up front with all you have instead of a staged escalation.

The clinical studies with prostate cancer treatment has pretty much supported that proposition.

Realistically, supplements supported by internet anecdote don't count.

Also as a general rule, most agents that are sufficiently disruptive to treat cancer are usually disruptive of other beneficial systems. They commonly generate side effects.

If it is simple and easy, and sounds to good to be true, then it probably is too good to be true.

intzer7 profile image
intzer7

Love to know ur supplement regimen.

RICH22 profile image
RICH22 in reply tointzer7

over 15 of them, some double dipped in a pricey but worth it Zyflamend (10 herb combo). Will get back to you on this, gotta get some sunshine and exercise. later.

intzer7 profile image
intzer7 in reply toRICH22

Thanks. I appreciate it.

RICH22 profile image
RICH22 in reply tointzer7

OK, here's the list, with daily dosages and/or extra info when I can remember them:

RED YEAST RICE - contains natural lovastatin, replaced hi-cholesterol statin Simcor (simvastatin+niacin). Simcor had an anti-depressant effect on me, kinda miss it but hey, can't have everything.

ZYFLAMEND - google for info on which 10 herbs contained

BITTER MELON - controls glucose, "eradicates T2Diabetes" - my A1C has not gone above 5.9 in 2 years. Sold in plant form in Whole Foods, gotta clean everything out but the juicy part, has slight bitter to no taste at all. Contains a natural insulin-like compound known as polypeptide-p.

HOLY BASIL - mild anti-depressant, can be used like cooking basil, alleviates mild depression. An extra dose will put you to sleep

SAW PALMETTO - helps keep prostate/bladder "working as designed" but sadly did not stop onset of my PCa

GINKGO BILOBA - mild anti-depressant, sharpens cognition. extra dose supposedly increases intelligence? haven't tried mega-dosing... yet.

HUPERZINE A - only the "leaf standardized" extract works as an Acetylcholinesterase Inhibitor -- meaning you get to use more seratonin. Improves mood, cognition, memory and access to vocabulary. At least 400mg dose.

SELENIUM - 25mg 2x/day. Garlic contain loads of the stuff but PCa might cause deficiency.

ZINC - prostate gland tissue contains 10x the amount of zinc than any other bodily tissue. American soil has always been zinc deficient, hence our crops are deficient. Sunflower seeds normally have loads but American seeds are low.

SALMON OIL - of all sources of omega 3, 6 and 9 fatty acids, my research concluded that salmon oil had the best ratio, with flaxseed oil coming in 2nd... provided the oil was properly manufactured: cold expeller pressed, no chemical solvents for extraction... which is why i stopped using phosphatidyl serine from soybean oil. Boosted cognition for me, but then found out why: excito-toxic effect

VIT. B12 - really not needed if you eat as much red meat as i do. there are NO PLANTS ON PLANET EARTH that produce B12, no matter how much crazed vegetarians insist brewers yeast, mushrooms, etc. contain the stuff... not that we even need that much of it. But without about 25mcg/day, all three parts of your CNS will simply stop functioning. Your thinking will approach autistic levels and your body will weaken and your dr. will diagnose epstein-barr. Ok, none of that is proven. Dunning-Kruger syndrome again. lol

VIT. C - i take shitloads, probly way too much. 2 grams morning, another gram at night. If I feel fluish, will take 2 gr every 2 hours. Still get the cold/flu but symptoms greatly ameliorated

VIT. D3 - an endocrinologist gave me a battery of 21 blood tests, said my bone density decay was hideous, put me on a weekly dose of 50,000mg that sent me flying! i get very stoned on any kind of steroid. D3 is a steroid hormone... not sure wtf that is, exactly. i take 5,000mg/day, bone density may be stabilized but i'm still shrinking; was 2 inches taller 9 yrs ago.

VIT. E - good for skin elasticity, feel it when i don't take it. not sure why or how.

ASPIRIN - half a normal tab morning, half at night. I absolutely refuse Big Pharma "blood thinners", esp. the Golden Egg for Afib patients, eliquis. The best/only reason that ALL 4 cardiologists I've fired proferred as to why eliquis was absolutely essential rather than aspirin was that eliquis is an anti-coagulant, unlike aspirin, which is a mere anti-platelet. woooo hoooo. When I asked how coagulation can occur without platelets... well, that's where the seas got rough and mal de mer set in. One dr. said there are about 20 blood clotting factors that can occur in the "cascade" reaction. Cascade clotting ALWAYS involves platelet plugs as the final process. Fibers, fibrins, fibrinogens, whatever ya wanna call them, alone cannot do the job. They just trap the golden seal: platelets.

Let them fill a freakin stadium with all the horse pucky about better, more-effective-in-reducing-risk blahdy blah with new improved blood thinners. I'm sticking (no pun intended) with good ol' salicylic acid, aspirin, from the inner bark of the willow. Anti-inflammatory, the most effective pain killer known to man, used by indigenous peoples the world over.

BETA CAROTENE - a component of Vit. A - the only vitamin with a known toxic level. I take the smaller gel-cap, dunno the dosage right now, sorry.

COQ10 - this and beta carotene are the only 2 pills i cannot feel with my body any difference when i don't take it. Not sure what the enzyme actually does but age diminishes our supply of the stuff, so against medical and a few know-it-all's advice, i go with the few hundred thousand internet anecdotes and take the mid-range dosage.

MG CITRATE - not the most absorbable salt but it will do, for heart health. Again, Americans are frequently low on Magnesium.

Now and then, I'll do some chromium piccolinate before heavy exercise. Also take a small dose of some kinda chelated copper, since zinc tends to deplete body of copper, not sure why, since i believe copper is more active than zinc but there it is.

Sorry for the delay. Also sorry for the needless digressions. damn you, dunning and kruger!!

JackT16e profile image
JackT16e in reply toRICH22

I did not see how much zinc you take

RICH22 profile image
RICH22 in reply toJackT16e

25mg in morning, 25mg at night.

RGD115 profile image
RGD115

You asked about my radiotherapy what l actually had was proton treatment 3 years ago then put on zoladex for 3yrs l was on stage 2 with 3+4 Gleason and PSA of 13.1

After proton my PSA was 0.1 and has been

ever since l am now off Zoladex and due for

a PSA test in May l was told by professor in Prague it may raise but should stabilise l don’t regret not listening to my consultant

here in UK and going to Prague to cut this story short l have not felt this good for

many years

JackT16e profile image
JackT16e in reply toRGD115

I hope you stay so well. Happy for you.

Darryl profile image
DarrylPartner

Here’s a link to the community you were looking for healthunlocked.com/prostate...

RICH22 profile image
RICH22 in reply toDarryl

wow, pays to be an admin. here! odd, that it didn't come up when i typed in Prostate Cancer Network into the search box... oh well, gonna peruse the joint asap. Thank you very much, Mr. Darryl.

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