PubMed agrees with me. Here is only a couple. All I'm asking, is for him to back up his belief. This is what Tall_Allen said.
pubmed.ncbi.nlm.nih.gov/301...
pubmed.ncbi.nlm.nih.gov/295...
I could show you 50 additional links on this subject.
Why don't you show me links that indicate " We have learned that full dose kills more cancer cells". Whom is We? Is that who you work for? Can you produce links that agree with you, not from the 20th century.
After you show me these links, then, "Wish". to not speak to me.
Why don't you research this. I have read an endless amount of articles, which you are supposed to follow, from your so-called Bible NCBI.NLM.NIH, I can't be the first one here to realise that you may be getting kick-backs from Big Pharma.
Tall_Allen.
"Only empirical observation is useful, and there is variance among patients. We have learned that full dose kills more cancer cells. If ¼ dose had equal effectiveness as 1000 mg, the recommended dose would be 250 mg. Your insane conspiracy theories have nothing to do with the dose. Janssen made the same amount if it were 250 or 1000 mg. I do not wish to talk to you anymore. Good luck."
He appears to consider my theories as insane. Here is what I said.
"What about my theory, which is based on math not science. If zytiga works for 2 years. 1000mg X 730days= 730000mg. What if that amount 730000mg is the amount before the zytiga becomes ineffective.
So if you take 250mg per day(low dose) X, 8 years to reach 730000mg
In other words everyone may reach 8 years effectiveness instead of 2 years effectiveness. Follow me? I do suspect that money may drive this industry. It is a huge market. $Billions and billions. I've also heard their are more people in the cancer industry, than people with the disease. Big Pharma wants to continue this flourishing industry. Any inexpensive research is thrown under the carpet. For example, why did they stop the low-dose Abi after 13 weeks? Is it because that super expensive drug cost could be reduced by 75%. 1000mg / 250mg = 75%.
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This is very interesting because recently I read (cannot recall where) about studies of "maximum tolerated doses vs minimum effective doses" of medications. One drug in particular was Xtandi (which I'm on) where it mentioned that an 80mg dose was shown to be just as effective as the full 160mg dose.
**** Again, this is just what I read somewhere, I cannot recall where, nor am I necessarily supporting this. ...I'm just sayin' ****
So, last week I saw my MO and asked him about the Xtandi full dose (maximum tolerable) vs half dose (minimum effective) that I read about. To my surprise, he said, and I quote: "we really don't know yet about ideal dosage so we shoot high" ... Didn't exactly give me the warm and fuzzies...
Yes, they keep a margin, and on the other side it would take forever to test all the possible dosage, I am taking darolutamide 1200mg per day, they say you can reduce it to no less than 600mg per day if needed. If I were sure that the effect was the same I would reduce it, given the fact that my DNA mutation seems to love daro to give me breast cancer as well.
But I must take the risk and on the other hand we must start from some point, then maybe they will reduce the dosage with experience.
the truth is that the dosage recommended is proven to increase life expectancy when added to ADT (over adt alone) by some 40%. That’s huge. Now another dosage could be better or worse. We do not know because other dosages have not been fully tested in a phase 3 double blind study. Lesser dosages could extend your life longer than the recommended dosage or reduce your life expectancy . It’s up to you if you want to be an experiment of one. It’s not however appropriate to personally attack a man who literally spends hundreds of hours helping others in this forum and elsewhere for zero remuneration. His grasp of the studies and facts surrounding PC is a huge benefit to others. You have no obligation to follow his suggestions, and question his positions with logic, , but I do suggest you think before you attack TA. He’s a friend …not a foe.
Again I sincerely apologize I emailed him through my Gmail I did not realize that everyone was reading this my point is all I ask is some research that indicates low dose has left efficacy but there is research indicating the absorption rate allows you to put less chemicals in your body as in medicine
I mean (stupid example but it's all that comes to my mind now), if you eat 8000 kcal today and then not eat for 5 days, your weight could remain the same (providing that energy in = energy out, so you should not workout more or less!), but your metabolism would change dramatically, calories in excess would be stored as fat (mostly if they come from fat or carbs), proteins would not be stored so easily as you cannot absorb more than 40-50 grams at once, blood sugar levels, cholesterol...everything basically.
I am not saying that your calculation is wrong, just that a mathematical average (which is, and I talk as someone who worked in the field of math/IT/AI for quite some time, the lousiest measure mainly used to calculated other measures in statistics) is a too simplistic way to see the problem in my own opinion. You divide the quantity without taking into account for example metabolism (bioavailability and stuff like that).
I discovered that darolutamide has to be taken with food because food increases its availability by 2-2.5 times, and this, in a more understandable way means it's "absorbed" at 60% with food, and at 30% on empty stomach. What a waste, only 60% is absorbed if taken properly!
This said, since we are talking about individuals, with individual DNA, individual metabolism, individual lifestyle which are 90% of the times unknown to doctors and to ourselves...we still have to start from some starting point.
I'm not very intelligent I do have common sense everything you say seems very logical I find often research contradicts itself especially from year to year like you said we're just man not God two top experts in the world one says black and the other says white
Research contradicts itself often because it is complicated when done on living heterogeneous entities (and we are much different among ourselves than lab rats). Science itself does have to be falsifiable, which means that there must always be a chance that a better theory comes out to replace the current one (otherwise it would be called religion and not science). But really, variables are so many. Surely costs are involved, but so is individual metabolism, individual diet, exercise habits, hours of sleep and so on. At the moment we are not remotely close to that level of personalization. On the other hand, if you were a doctor would you risk a lawsuit prescribing a dose that is not in line with the one proposed by the producer?
Don’t be too hard on yourself, you are going through the same frustration we all have. When I see that in 2023 we still prefer to spend in warfare lots more than we spend on research and education (considering the amount of university research that is waiting for funding) I go crazy!!!
Lots of Military spending fuels research...you just don't recognize it because your looking in a myopic manner. Never forget, the primary purpose of any government is the safety and well-being of it's citizens. Can't happen without strong Militaries.
Not myopic at all, just look at the difference in the budget. Not saying that they should give zero to defense, just that we have not evoluted a bit in the centuries. More idealistic than myopic.
Defense budgets are spent on research here in the US, plenty of collaboration with universities. That is what I'm referring too.I'm looking at Ukraine and Israel and history is repeating itself..in my view.
not to mention that veterans have a higher incidence of cancer than common people, so I see it as a moral obligation to pay for research that can help or save them.
DoD spends millions on veteran health care and prostate cancer research via grants. I see the proposals from DoD presentations. You can look it up. It's not classified.
I know, I don’t have to read that. I am just saying that I see it as a due way to express gratitude to them since they have greater incidence of some diseases, cancer included, due to their job.
You have to wonder why did they stop the low dose research after 13 weeks why didn't they continue it could save people thousands and thousands and the industry million and millions but someone's going to pay for all those mansions and Mercedes-Benz
You wouldn't be getting 4 tablets per bottle under your scenario. You would be getting 30 tablets per bottle. You can take 250mg now under your scenario since the bottle contains 120 tablets.
You are addressing the same person that persistently echos the silliness of: "There is no PSADT bellow PSA of 0.1". Trying to exchange reason with with him, is just a waste of time. Nevertheless, he is very useful and as such also very popular with patients that embrace the dogma: "I will find a good doc and follow what she/he tells me to do".
Yep I messed up he is very good I agree he helps me I sent him an email through my Gmail and I didn't know this reply would be exposed here I feel like such a fool I do apologize especially to tall Allen
I agree with TA. Funny I spoke to my Onc about this very thing last week. I had a bilateral orchiectomy last March, was on Elreada and switched to Abiraterone. Abi works differently that Elreada as it doesn't bind to the cell and block Androgens. So my question was direct. I have no testes to produce testosterone. I assume and wonder, does my adrenal gland try to make up for the difference? He smiled and didn't role his eyes and said well you can try lowering your dose but there's no empirical evidence to prove its efficacy. It was theoretical and he surmised each person would be different. So he knew where I was going with the question and said it was my risk if I was willing to take it but Abi inhibits the enzyme CYP 17 at the pituitary, the Adrenal and the tumor. He saw no value in cutting the dose without data to support it. I haven't cut my dose.
Hi swag, I do have bilateral nodes on my adrenal glands. Primary aldosteronism. My Onc doctors and I do not agree on much. I do not take prednisone for PCa. I believe I don't need it and also prednisone is not good for the bones according to most sites, especially long term. I take Amiloride for Aldo and prostate cancer. It seems to work for both of my conditions It is a mineralcorticoid as opposed to glucorticoid. I take 2X-3X the max dose. I feel no need to take prednisone.
I don't understand why my doctor disagree and are never interested in my information which come from their scientific data base, Pub Med. They don't seem to have the time and they think I somewhat insane, which Tall A has
I really have limited understanding of most medical terms. But I do extensive research and it takes a long time because I am a very slow reader and I am not very good at verbal skills, I do have math skills though. I need to stress that I am not that intelligent and I find medical terms difficult to understand. I do use medical terms, only because I copy/paste and hope I use it correctly. I study research compulsively and obsessively I don't really grasp what I read. And I may be a fool at times. It took 40 years of uncontrolled blood pressure for heart and kidney and family doctors and no one could figure out why my BP was resistant to meds.
Only recently have doctors realised that 10% of HBPs are adrenal. Aldo. caused by excessive aldosterone. Amiloride are also prescribed for Heart Failure. I hate Meds, they will destroy you eventually. Drugs treat symptoms, they don't cure them. But they are useful if your beyond repair with diet.
Those with Aldo or HF, in my opinion, may not require prednisone.
yeah can't speak to any of your conditions as I'm not a doc but you're citing 1 experiment from 2017 that included 5 people. I suggest a more balanced approach. Both treatment choices ( Prednisone and combination of amiloride and hydrochlorothiazide) have their own side effects.
If I may, your approach seem a bit combative. Docs will stick with the SOC for both medical and legal reasons. Again, not a doctor but if you presented me wit this document, I would pass it off as speculative. Of course you have choices and you've made them believing what is right for you and I tip my hat to you sir. Ultimately data (In your case both bloodwork and scans) will prove you out.
So forgetting us here for a minute, what do your oncologists say? What issues do they have with the research you present them? In the end, that's the opinion that I would seek out. Also how many medical opinion have you sought out directly that applies to you Just using the study in your reply to me, have you reached out the the authors to understand their next steps?
You are wise swwags, I have days of research to see if I agree. I'm certain I found research that included either 10.s or 100s of thousands. But right now I need to leave. I have weak bones, it hurts to go upstairs, so I'm going swimming now.
But my guess is you are most likely correct. In a few days, I may continue with prednisone. From what I read this med can be very hard on bones. Also, it seems, a Abi/ATD with pred. reduced PSA by 50%, BUT this dosage was 10 mg twice a day. I, like most take 5mg once a day.Originally my doctor insisted on 1000mg Abi, but I took only 250mg w/low fat meal.I decided this because my PSA remained at .01 for many months. Now that my PSA went from .01 to .04 , my plan all along was to take 1000mg once PSA increased. But now Onc will not prescribe me this because he's concerned I will stroke. I have crazy fluctuating BP, I suffer morning HT and white coat syndrome, I fear white coats. lol. Docs say this is caused by Abi. But they are wrong and they do not believe me. My BP has improved immensely in the past year and half. For 40 years 160-200sys/95-120dys. Now 115-150 sys/78-95dys. Except when I see the white coats 160-200sys/95-110dys.
10 years ago it higher for white coats. I was kept at hospital 228/157. They could not find anything wrong with my heart, after 24 hours they released, they were puzzled.
When I went in for observation, they ask me how I felt, and I said ok. When I left they didn't react so I approached them and what was going on and they responded we find nothing, everything seem ok. LOL Took them 40 years on max 3 drugs and max dosage, and never found a way to control my BP. This year they realise I have primary hyperadosteronerism. But 40 years suffering has cost secondary Aldo. Such as mild CKD and LV (kidney and moderately enlarged left ventricle){enlarged heart}
Anyways, I tip 2 hats to you, I thank you so much, at least you didn't tell me I have insane conspiracies, and that you wish to no longer speak to me. You may be helping me more than you think!
Well brother, you have nothing to prove to me. I have my own fun stuff to deal with. I had to (or is it got to?) drop Erleada. See my bio. It sucks to be sick. Again though, you're citing a doc from 2016. In my mind, the use of older studies without follow up leads me to wonder why it isn't pursued. This isn't conspiratorial as the alternative treatment you propose still incorporates aid.
Here is an article written this year. It follows 3 patients. I believe one is similar to what you describe. It doesn't cite when these patients were treated and is imo still scant information, but again, if it's me, I would reach out to the researchers and get second opinions. I would also ask my oncologist to help me understand.
But note my earlier comments on Standards of Care. It is noted in this document that "The newly available nonsteroid, selective mineralocorticoid receptor blockers, such as finerenone and esaxerenone, could also be very useful in treating mineralocorticoid excess with abiraterone. However, neither are currently approved for this indication."
You are an intelligent and well organized guy. You have been through so much. Such a long battle, 8 eights of yo-yo. I never knew completely what they meant by a battle. Now I know. It is so fkg depressing death. . You have not given up. It must be very very hard. I'm still in denial sometimes. You are so strong, it's hard not to give up. It's those ups and downs that get depressing. But somehow....you keep going. In fact you had a PSA . 05, not so long ago. Followed by lung cancer. I will pray for you and I cry for you. Those damn meds, I can't stop crying. One day, sooner or later, hopefully later, you will be at peace. It seems important to believe in God, even if you don't. Good luck.
Thank you for the kind words. Please don't feel bad for me. Other fella's on this site, both present and past have had it tougher. Besides, complaining doesn't work. Believe me I've tried
I am already at peace. I love my life and I'm a happy man. I am surrounded by good friends and good family.
I run 15 miles a week. I will probably get back to swimming laps this winter. I'm an avid golfer (well winter is upon us, so it's seasonal). I've been married for 46 years. 32 of the to the same woman I've written one book for my 8 year old Grandson and am writing two more over the winter to complete the trilogy.
I retired 9 years ago @ 57. Decided I wanted to spend my life differently.
I have a 2007 Jaguar XK that I love. It spends more time in the garage than on the road but it's a beautiful car and a blast to drive. It will top out @ 158 mph but I chicken out @ 120 mph.
I avoid negative thinking as much as possible. Sure it creeps in, but then I catch it and turn it around. When something negative comes into my life, I try not to react. I ask myself "is there some action I can take?" If there is, I do. If not, I forget it and move on.
I avoid the news. I don't engage in politics and I am no longer friends with people that are obsessed over politics or conspiracy theories. For the life of me, knowing how short life is, I am astounded that anyone would waste their time with that stuff but to each his own.
I use humor as a coping mechanism. Death is inevitable and it seems we are the only creatures on earth who know it's coming. I'm not religious but don't judge those who are.
Once I came to grips with my illness I read every scholarly article I could find. Educated myself as much and as quickly as possible. Ahead of every doctor visit I send them questions so they are prepared to help me and we don't waste each others time. I am now doing the same thing for Multiple Myeloma as I go through the initial induction chemo phase.
This site has so many greats both past and present. I miss Great John terribly. I love the humor that J_O_H_N brings, The QOL posts from Dockam, the positive thinking from Scout for Answers, the kindness from Kaliber, the groundbreaking work of everyone doing BAT, TA's commitment and research following his successful battle with this disease. There are many more. Yep, Life is Good.
Easy answer...... All at once place the whole bottle of meds in your mouth and then spit out those tablets you don't want to swallow (the bottle is optional).
Can you imagine the grief a huge FARMER must get if his nickname is "BIG".....
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 11/11/2023 11:02 PM EST - Honor our Veterans.
Based on my reading, the goal is for 250mg to have the same bioavailability as the 1000mg on a continual basis, which can be attained. The remaining remnants that are not absorbed into the blood stream will be discharged. In other words, you may not achieve the additional efficacy that you allude to in your post; but you won’t be less effective.
The advantage to taking 1000mg on an empty stomach is it is easier to replicate and has been extensively researched in numerous trials. On the other hand, by eating the same low fat breakfast for the rest of your life, you will achieve the exact same outcome (bioavailability). The problem is no clinical trials have studied the bioavailability over the long term.
In 2020, 29% of Oncologists in India agreed to prescribe low dose Abi exclusively.
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Price difference between 250mg and 500mg Abiraterone
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