In a three month period my PSA went from 58 to 70. Obviously my testosterone was producing more new cancer cells than my alternative treatment. I started the combination treatment on Dec 1 by taking 2 ORGOVYX. Dec 15 my PSA is 27.5 and I will take one more ORGOVYX today hoping to reduce PSA to 10-15. At this PSA level I believe the alternative treatment will kill more cancer cells than my testosterone can replace. Terminating the cancer rather than treating it just like the two cases cited by the U of Maryland.
Today my alternative treatment is Clioquinol + Zinc, Ivermectin, Quercetin, Myomin, Copper, berberine .
If you are castration resistant why not give it a try? Termination or treatment, your choice.
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agnut
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No need to be rude, save your comments for something constructive. I'm guessing you have zero medical training, just what you read on the internet, correct?
It obvious you come here for one reason, to argue with people as you did in the past. (We know who you are🧛♂️) I'm sorry your so lonely, maybe a dog to keep you company?
I knew it....are you the individual?.. I'll answer. No. Where are your scans verifying this shrinking of mets? They don't exist, right?Two peas in a pod, you and civil disobedience.
No .but unless your met was on your nose, you need a scan to show it's gone... presumably you had a scan showing the met existed in the first place. You've been exposed. Time for you to return where you came from
The met was on my chest in Sept and today it's 95% gone I don't need a scan to see it has shrunk. Do you think this forum is a cancer court and you are the prosecutor?
Nope...but the members should be honest and the only way to determine if mets are shrinking is via scans. Since you haven't had one, it's all conjecture on your part.
Just as you could SEE if a wart on your nose was gone I can SEE the met has shrunk.
Court adjourned. Take it or leave it I won't lose any sleep either way.
Ignore MoonRocket. He has been removed from the group several times. Each he comes back with hate to spew. Turn a deaf ear to the guy, his life goal is to argue with as many people as he can before he passes on.
After you're done experimenting on yourself, you'll realize you wasted your time and money. You'll then blame the pharma companies and doctors for your predicament. I've seen this movie.. tiresome.
This paper you provided a link to applies to you? How was this determined? BTW This treatment protocol is just theoretical...and for companionate use.....are you so terminally ill that you require companionate use of a theoretical treatment?
It's bat shit crazy to implement to this protocol.
Again I'd rather TERMINATE my cancer than treat it for the rest of my life. I have nothing to gain by posting the U of Maryland's protocal. Like I told John, try their protocal and prove them wrong then you'l defiantly have the last word which seems so important to you.
If there are truly convincing studies of alternatives that extend life, then we must believe that our Docs are all committing malpractice by not offering them ??? Or that our Docs are just ignorant?
Nah... you're bat shit crazy. You need serious help...a whole team of psychiatrist working on you around the clock. You'll be gone soon, good riddance.
Nah.. you'll be gone soon. The funny thing is you don't last long on the Advanced Prostate Cancer forum...so you live on sites like this deluding yourself than anyone cares what you write. You're a pestilence to yourself... it's just a matter of time. Good Riddance to you.
Have you deep throated one to many cheesedicks little boy? Maybe we will leave you alone for a while, you're too easy. NO WE WON'T. Now go deep throat a chessedick, little boy. One more thing, please don't bitch slap your boyfriend tonight, it's not his fault.
I'm doing great...better than you...you do know online harassment is a federal crime, particularly the vile stuff you posts. I'll be in contact with the proper authorities on Tuesday to make a report. You're not too bright so I'm certain your digital fingerprint will easily lead them to your front door.
The fact that there is no clinical (trial) proof that alternative/complementary treatments help is NOT proof that they don't work. It simply means that no one has invested in doing the trial.
I am fully engaged in getting SoC treatment having had ADT, Xtandi, radiotherapy and currently docetaxel for my metastatic PCa but that does not preclude me from consulting a Functional Medicine Doctor for complementary therapies which include a bunch of supplements to block the cancer pathways and Mistletoe therapy which HAS had clinical trials showing it extends overall survival in cancer patients and helps alleviate some of the symptoms of chemotherapy which for me have been quite brutal.
I don't understand why some people are so scathing of complementary therapies having not tried them themselves. Everyone is entitled to have their own views and spend their time and money on what believe will help them.
Agree 100% on trying whatever you want , and believing whatever you want. I didn't read the studies/links posted above, but I'm guessing they are not randomizeed trials proving a gain in life expectancy when these alternatives are used? I am not at all questioning your veracity, but few/none of us know any of the other participants here, so skepticism is not an illogical perspective to have. There are so many alternative treatment suggestions for metastatic men, so which would we choose? There are no definitive studies generally, so just flip a coin? Try everything?
If there are truly convincing studies of alternatives that extend life, then we must believe that our Docs are all committing malpractice by not offering them ??? Or that our Docs are just ignorant?
In any event, if some type of proof of no or tolerable harm from an alternative, and affordable, give it a try?
f there are truly convincing studies of alternatives that extend life, then we must believe that our Docs are all committing malpractice by not offering them ??? Or that our Docs are just ignorant?
Doctors do what their employers tell them. Follow the script of “SOC” that is funded. This is heavily influenced by big pharma who call the money shots. Doctors who don’t agree leave and become functional or complementary practitioners.
Some examples - 1. when I was first diagnosed I was not offered triplet therapy by my Doc because its wasn't funded by the NHS. 2. I've asked about getting a liquid biopsy to see if any new DNA mutations have developed. The Doc cannot support this as it's not funded. 3. If the docetaxel fails, the next best treatment may well be Pluvicto but my Doc won't recommend this because it's not funded by the NHS. I wouldn't call it malpractice or ignorance - he's just doing what he is paid to do.
OK.....this is an insurance problem in the UK....and illustrates one of the reasons why a great many Americans fear a Medicare For ALL approach in the USA. I believe the NHS spends much less as % of GDP compared to US spending......evidently overall British voters are OK with this ? after all, higher taxes are seldom popular?
IMO, your Docs should still discuss the non-covered options, if there is solid evidence of efffectivenes for your situation. At least hem, the patients will know and be able to express public opinion about the failing of the NHS system? Then again, maybe Brits are fine with the limitations of the NHS system? after all, lower taxes!
The NHS has a lot of very good qualities such as providing free at the point of need medical care to everyone with a lot of highly dedicated staff but inevitably, it has limited resources - as you say funded by taxpayers - so cannot provide everything that everyone wants. Cancer care is good but they have to be selective of what to spend the budget on to give the maximum support to the most people. When pharmaceutical companies are charging extortionate amounts for new drugs, it makes it even harder to justify. Pluvicto was reviewed again last month but at £20,000 per infusion deemed too much. The result is that the drugs that are provided are given in a scripted flowchart order as the disease progresses.
Doctors will mention drugs not available on the NHS but their main focus is on providing the care that is within their gift to give.
As to Brits being "fine" with this, every election the NHS is a major battleground with both main parties making promises to increase funding if they get elected. The population is ageing so costs just keep spiralling upwards.
I am of the exact same philosophy. I've spent hundreds of hours researching over the last couple years to maximize the chance my cancer will not return and go metastatic. I've determined there are a few major challenges that really put the onus on us, the patients willing to put in the time to investigate things, to try things outside the SOC:
1) Many doctors are not up on the latest studies. You have to find one with experience at a center of excellence typically.
2) Most all doctors, not just the best ones, are very apprehensive to go along with things outside the SOC that have no strong Phase II or Phase III clinical data proving efficacy. My thinking on this is, if there is even a Phase I trial or in-vitro/vivo study that shows something is not COUNTERPRODUCTIVE, then why not give it a try as long as it's not putting a financial stress on you?
3) The funding for pharmaceuticals that will make companies billions of course dwarfs funding for human clinical trials of alternative therapies using off-label use of pre-existing cheap drugs or supplements. And most of those are funded by the supplement manufacturer to fuel marketing claims. The conflict of interest still doesn't mean the alternate treatment doesn't work as long as the design of the study is sound and peer reviewed. Unfortunately to date, most may show a slowing of PSA progression but are not a cure. And there's argument that it could be PSA masking and not actually slowing progression of cancer.
#3 is the most frustrating to me. There is in vitro, in vivo evidence of anti-cancer/anti-metastatic mechanisms for things like Berberine and Agmatine Sulfate. And this data has been around for more than a couple years if not much longer. YET, there's no human clinical trials to date started or completed on these things. Curcumin, Green Tea, Pomegranate, and Lycopene, Metformin and a few others have been beaten to death. But new studies and other things are lacking.
So I'm basically of the mindset, if there's at least in vitro, preferably in vivo data that shows it doesn't PROMOTE PCa progression, then it seems to me there is very low downside/risk to giving an alternate treatment outside the SOC a try with the exception if it's very costly then you have a financial risk.
Unfortunately for most doctors it is as if they feel their oath to "do no harm" means not recommending anything outside the SOC which is backed by multiple Phase II and Phase III studies (and insurance will pay for.) There are exceptions like Dr. Scholz and a few others have a wider point of view than most Urologists/Oncologists.
I am all for “COMBINING SOC” with any other alternative treatment. The problem is agnut is not combined SOC with alternative methods. A few pills of Orgovyx is not SOC.
SOS for Orgovyx is a loading dose od 3 120 mg pills first day then 1 pill/day thereafter.
Three Orgoyvx will accomplish what I believe needs to be done. No need to over medicate.
At 10-15 PSA the Clioquinol+ zinc will kill more cancer cells than my testosterone can replace and leave enough testosterone to service the other body organs. Just like the U of Marylands cases the object is a circulating tumor cell count at zero.
I'll call it" Combining Orgovyx with alternative care" from now on.
Food unless it isn't. Have you looked at the BAT research? Summation of some studies showing testosterone is related to PCa leads me to 7 high T prevents, 1 no difference, and 5 low testosterone prevents.
There are some recent studies published on PubMed looking at off-label meds like Ivermectin, as being useful in conjunction with SOC in lowering PSA and resetting sensitivity to ADT in a % of men. I'll try to dig up the link and come back with an edit. Still in study phase but ...
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ADT vacation versus Continuous
Consulting on next steps
