I have resisted taking zytiga I took a little here and there. But PSA was rising so I said ok for a month and in 1 month solid my PSA went from 22 to 40 that's exactly why I don't trust these drugs. Be careful out there about what you take. I'm not taking any more. and we'll see what happens. Last month I brought PSA down using CBD's Vitamin infusions, mistle toe injections. Stop this insanity is what I say.
zytiga doubled my PSA in 1 month That... - Advanced Prostate...
zytiga doubled my PSA in 1 month That's exactly why I have not taken it. Well there you go. be very careful what you take it's an experiment
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4Rosebud
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PSA often goes up when a new therapy (like Zytiga) is started. It's because cancer cells are dying, releasing their PSA into the bloodstream. There are some known reasons (like AR-V7) why Zytiga might not work in some men, but you have to give it at least a couple of months, and confirm with scans. You want to treat the cancer, not the PSA.
called a flare I've been told by my onc that zytiga doesn't. although I don't know for sure. he's my very new doc and the jury's still out.
Your onc is not correct:
clinical-genitourinary-canc...
clinical-genitourinary-canc...
I agree he is to a point but its not always cut and dry everything is different for everybody. Pubmed also agrees that it does I'm sure thats whats going on We'll see. Its all a test Tall All there is no this is the way it is. it's a moving target.
This rise in PSA may be what is called "PSA FLARE" If the treatment is continued ..in about 8 to 10 weeks..PSA might start dropping like a rock.
thats what I'm thinking after I came back dow off the roof but my onc says it doesn't..Honestly I believe about about half of what they say...lol anyway.
When starting zytiga some patients develop a " PSA flare" which could be greater than 50% of the value before taking Zytiga. Subsequently, most of these patients could obtain a favorable PSA response.
pubmed.ncbi.nlm.nih.gov/249...
thanks thats what I'm thinking after analyzing it. although my doc says no...guess its time for another new doc haha.
You have 3 good answers. Plus thousands of men who participated in clinical trials. I wish you the best of luck.
I agree with what others say even though it didn't work for me, it initially dropped my PSA from 300 to 88 but is soon started rising again (110 after 2 months) the Oncologist kept me on it another 7 weeks just to be sure.
Excellent quote from Tall Allen "You want to treat the cancer, not the PSA"
• in reply toZetabow
What did they try after the Zytiga? Zytiga only worked for my husband for 15 months. Then the PSA was going up. Then they switched to taxotere and it is going up on his third chemo. Next visit recheck the PSA and if it still going up we will switch to something else. Wonder what you have tried. Thanks.
What they said.....
My Husband has been on it now for 6 weeks, after a steady monthly rise of PSA, in Dec it was 27.5 then stated Zytiga 21/12/20 , Four weeks later his PSA went up to 30.7, (arghh) today just had a consultation with our OC and (thank the Lord) it has gone down to 15 ! Just hoping now that it continues this trend, and for many years !!!To say we were overjoyed that the Zytiga had actually done something, after Caxodex failed us bigtime is a huge relief!!I know it can last for Months or Years , and hoping ours will be the latter.
Kim
Mistletoe is simply snake oil for PCa and false hope for others. There is NO solid proof that it is effective vs. PCa - where did you get that information from? A 'trusted source' or someone who could benefit financially from you following that advise ?
You will read about flares and other facts / possibilities about why you had a rise in PSA.
Of course, it is possible that Zytiga isn't working for you and that is why you should consult a competent / qualified MO to try to establish the best course of action for you.
There may be other factors in play here where some specific testing might help identify what is actually happening right now that 'they' aren't aware of.
Perhaps your situation has changed and there was a change in your PCa progression that needs to be identified.
IF you assume that you can manage it on your own with 'unproven' naturopathic solutions, then that of course is your choice. There are some supplements out there that have shown some positive effects when fighting back PCa - but mistletoe ISN'T one of them ad you are wasting your $$$$ on a false presumption.
I think it unwise to try to convince others about questionable therapies.
Of course, I wish you the best - you are in a tough spot and I don't want to be overly critical.
It's got to be difficult and disappointing when it' looks like' it isn't working for you ......
• in reply toRonnyBaby
I don't think you like the negative messaging - you have already made up your mind .....
RonnyBaby• in reply to
I would suggest you look into Care Oncology for some third party 'supplemental / herbal' support. I have seen mention of that organization that originated in the UK and has established a North American presence to assist cancer patients with alternative and complementary treatment options.
I looked into their 'offerings' and STUDIES and would seriously consider taking a closer look at what they have to offer. There is some real promise there and I do believe that some persons have been helped.
We are all individuals, and circumstances vary., so it is hard to make any predictions.
I know that I have sounded unsympathetic but I have already looked into so many of the alternatives out there and it is painful to read about the 'junk science' that some desperate victims fall prey to.
You are much more than a wallet waiting to be emptied.
Wishing you the best on your journey .....
• in reply toRonnyBaby
That was a copy/paste from your response to my post on genistein and the studies against soy...you seem to anti soy which is your prerogative but I've read plenty of studies on soy and most lead to a favorable impact when taken in very moderate amounts, not in high amounts as indicated in the unfavorable studies.
You appear to be convinced of the Care Oncology protocols and take those supplements. I chose really to take little except POMI-T and a Turmeric Patch. Every other nutrient comes from my diet. Therefore my wallet is impacted very little.
Wish you the best on your journey...
RonnyBaby• in reply to
I don't take the Care Oncology supplements and have never contacted them. I just thought that offering a source that seems more credible in their approach to complementary / parallel treatment(s) was simply pointing to a more scientific approach to documenting a protocol with some evidence of success.
I have a few years behind me since my Dx in 2016 - enough time to try to do my homework about what MIGHT be out there to assist in my treatment options.
I was / am a G9 N1, M0, T3B at the outset and have been on an ADT vacation - post Radiation treatment / clinical trial and having done third party oncology bloodwork at the cost of thousands of out of pocket dollars.
I am currently at a point where a BCR has occurred awaiting a PSMA/PET scan scheduled for next week. I estimate (because of the trend and time elapsed since the last PSA test) that my PSA is 'probably' around 7 or 8 - give or take a point or 2.
I do a fair amount of research prior to consuming any supplement(s) and I would add that you might be surprised at some of my findings and conclusions.
Every supplement that I have taken has come from the articles and evidence provided in these forums and T_A's blog.
I have added / subtracted supplements from my list (there's about 6 related to PCa) as new articles findings support or negate specific ones. Soy has been an on and off decision based on numerous postings that I followed. I will consider Care Oncology in the future if my situation slips. I do believe that I have already pushed back my PCa thru statistical evidence. I have successfully 'slowed' down my rate of progression (remember my 3 1/2 year holiday) and a potential cure for me might still be on the table - although it might be 5% or less due to KNOWN circulating CTCs that were found by the testing that I have done and paid for as an extra.
That certainly does not make me an expert - I just try to call them as I see them.
I will stick to my position on soy - therefore we will agree to disagree. This 'thread' needs to end because we are going nowhere except in circles.
I sincerely hope you find some healing and answers about your situation, prognosis and progression. We are all brothers in spirit when it comes to fighting back / pushing back on this dread disease for the sake of ourselves and our loved ones .....
Your perspective and thought process is valuable and parallels my own journey. So thank you. I am currently off all ADT treatments post PLN RT and waiting to see if will have another BCR. Taking my carefully curated supplements as you are. PSA is 0.09
Thanks for the comments - I know I come across as critical sometimes but I'd like to believe that my heart is in the right place ....
mine Jumped from 21 ro 40 in a month after adding zytiga. You can tell I'm pissed I actually had it going backwards using rick simpson cbd oil, Cbds, vitamin c infusion, cucumin, and mistletoe injections every 4 days or so. My do zytiga doesn't flare well What tf just happened. anyway thanks keep up the natural path, I may do a ozone treatment this month with a vitamin c Infusion. its expensive so I have to pace myself. plus it will never get rid of it. so pace myself
Listen to Ronnie baby and Tall Allen know what they're talking about. And as for zytiga has kept my PSA undetectable for 75 months pretty sure it works better than mistletoe
Thanks wings. I'm not convinced . but who is the other name you mentioned who is that is it you. I'd like morw info and do you know why I'm taking mistletoe? I'm curious.
HiI find you post interesting. As a person on AS I am not in a serious situation but do monitor these sites so that I can be prepared if I have to make a treatment decision.
Any way to the point are there any supliments worth while taking. specific or reliable sources of info that could help. Goal is to make sure that what I have stays at bay so I can avoid treatment. I do take vitamin D based on Doc recomendation(low vit D result on blood test and Areds2 vitamins for eye. Always been one to avoid unceccessary Meds and at age 70 have only recently and reluctantly with some resistance taken flowmax on regullar basis. only reg prescription I have ever been on
so thanks in advance for any comment
You aren't the only to ask that question. I need to take the time to give the topic the justice it deserves.
I will prepare and post the list of supplements I take (or abandoned) in the near future.
IF you decide to 'follow' me, you'll see it in due time .....
I am awaiting the soon to come results from the latest test I'm scheduled to have.
I came up 'all clear' on bone scans, MRI and CT scans but my PSA is above 5 - maybe 6 - 8 because it has been more than 3 months since my last test that came in just below 5. I wonder where it is but will do it in less than 2 weeks from now - along with a COMPLETE blood panel to look at the bigger picture.
A PSMA/PET scan is coming - it will help with the trends and predictions and options I am facing. I had radiation in the past and I'm told that probablyIT can't be done again in 'certain areas' - I had limited regional spread in the pelvic area (a few HOT spots) and it might be likely that that this the source of the rising PSA numbers.
I look at my options and wonder what's next, although some form of ADT seems likely. I had a miserable time with ADT the last time around and wonder how I'll tolerate it. LUPRON made a mess of me !
For awhile my PSA looked like it was going to run away on me. Something happened that LOOKS like the brakes were put on - at least slowed it down.
There is another possibility with the trending and that is my numbers were 'masked' by supplements (like turmeric) - so I am going to get tested after stopping ALL my 'suspect' supplements for at least 3 days.
I need the results to try to figure it out and consider what's next. I am in a GOOD spot having access to a center of excellence for cancer care in Canada although Covid has turned the tables for some - I've been fortunate to not have been affected YET.
I need to see IF the supplements have helped or shown NO benefit whatsoever. I was undetectable for over 2 years and on an ADT vacation for 3 1/2 - so the NEW numbers need to be interpreted, assessed and some conclusions need to be made.
I have a competent MO to guide me and can chose alternate treatments and supplements based on what I continue to learn and research.
My overall health is decent and I sure enjoyed my ADT vacation - hoping to find a solution to HOT flashes is high on the priority list and YES I have tried several of the more common 'solutions' but none worked for me .....
You might want to give it another good solid try. My husband did well on Zytiga for 3.5 years.
I'm not following. Reported what?
4Rosebud• in reply to
oh just the other day, The same day I made that post there were several others who had the same thing happen. I thought it might be a flare, my onc says no supposedly doesn't happen with zytiga...so I thought it was strange that so many in here on the same day...who knows it could be simutanious progression lol.
• in reply to4Rosebud
Ok. We are all beholden to the dreaded psa test once we are members of the APCA club.
I'm on Eligard and Zytiga and its working quite well for me at the moment and I realize that it's not for everyone.
I'm only at this for 18 months and I have 6 months to go before I'm due to come off all ADT meds. Keeping my fingers crossed I remain < 0.01 psa.
Good luck to you
I'm 6 years incredibly healthy. stage 4 and told I had 60-90 days 3 years ago. I done it by avoid any of this so far.Its scary and not for everyone, education is key. but I am interested in how its going for you I'm not stupid or I don't rule anything out. So how is it going for you I want to know. open mind
Yes.
Your tone doesn't help in the context for serious discussions and I call out your 'research' on mistletoe, as factually incorrect.
You are one of the tiny few over the years who has made such misguided claims within these forums plus your anger towards my stating that it is NOT a recommended or successful treatment for PCa puts an end to anything other than sinking into negativity and name calling.
I further note that you have an extensive 'self-protocol' of numerous non- conformist treatments that makes me shutter when I think of the expense and wasted efforts of it all.
And next, you'll tell me about the Rick Simpsons protocol. You likely aren't aware that I am also a licensed grower of medical cannabis. I have been doing THAT for over 3 years and MEDICAL cannabis has NOT cured my PCa after 3+ years post-Dx. I grow my own and have access to the BEST genetic selection that you won't buy at some dispensary.
I suspect you have overconsumed something because your attitude is suspect and you are quick on the offensive. I read 'fast forward' as if you are racing towards something I can't pinpoint.
I'm sure you'll be further upset after reading this, but unfortunately, we won't agree on anything and I expect you'll be livid. Then the rant and the name calling is sure to follow- so save it for someone else - it'll be trash in no time. Sorry, but there is no discussing with you ....
• in reply toRonnyBaby
There is a medical cannabis shop right next to the Vitamin Shoppe in my area. I shake my head everytime I drive by and see the 20 somethings standing in line.
Who knew the medical necessity for cannabis at such a young age.
The true measure of the insanity is all the illnesses it can now help treat. The list keeps growing.
Amazing.
RonnyBaby• in reply to
I think we can agree on something about cannabis.
We are born with an endo-cannabinoid system - and so do virtually ALL living creatures.
People are taken aback when they find that out.
YES, the list does include fish and foul ....
Cannabis is one of natures NATURAL medicines that creation has offered to us for free.
The origins (genetics) of 'weed' is far from the offerings that are out there today.
Selective breeding has increased THC content a hundred fold, while the CBD has been eliminated from most varieties.
The 'buzz' has been added for obvious reasons (like sales and $$$$$) while the natural origins (CBD tyers and full spectrum terpines) have been tossed in with the rest as illegal and mind altering.
Too bad, because that has caused probably about 50 years of research on the medicinal properties of the ORIGINAL strains and the associated terpines.
Big Pharma is heavily invested in the research of the medical aspects of the terpines and the other major compounds found in cannabis (CBD, CBG, THC-V and the 'others').
Many people are surprised by that - although the USA is not up to speed YET because cannabis is still a PROHIBITED substance and special permission is required by BiG Pharma and anyone else for that matter to do research on it.
Other countries are further ahead with their research because of the American FEDERAL position on all things 'pot'.
I'm a Canadian - which might explain a few things about my ability to cultivate and apply thhe growing knowledge base on medicinal cannabis overall.
I originally became involved in cultivation (legal) due to my cancer Dx. I KNOW some people who appear to have beaten cancer or at least lasted years past their 'best due date' by following Rick Simpsons protocol OR by applying it topically for skin cancer.
One CLOSE associate has beaten back 2 forms of cancer so far - breast and lung cancer - which came back and were fought back into emission with Rick Simpsons protocol.
I can't do Rick's protocol because it is too impairing - although there are alternate forms of administration.
I haven't found enough cases of cured PCa to offer out to anyone within these forums, but I have pointed to some anti-tumor and other 'antis' that APPEAR to hold some promise. Even in my own case, I have to wonder if I've managed to help myself with the 'evil weed' - I grow some high quality custom selected CDB strains and will continue to do so. I avoid THC as much as possible and selectively grow strains that have little or no THC in them. I don't like the buzz and I want to be able to drive a vehicle unimpaired.
THC CAN compliment CBD when the ratios are right (LOW THC + HIGH CBD) for SOME conditions. For many conditions, THC is useless and should be AVOIDED.
In many instances you'll read (while researching) that old phrase - MORE research needs to be done to do this and that.
I an convinced that there is a LOT of good that will spring from this research and eventually more concrete 'cures' and proof will emerge for different things that ail us.
Too bad about the lost 50 years - but IF we can survive long enough, there may be some help on the way.
The American FEDS need to change their tune and allow for this much needed research to proceed in the best interests of their own people.
There it is - I put it out there for those that think I have no clue about 'weed' !
There is so much more to it - but this is not the time and place to spend on efforts to further the cause or research ......
• in reply toRonnyBaby
Did a quick read on endo-cannabinoid system. Interesting but it begs the question why External sources for thc and cbd are okay but soy is a big no no. Particularly when there is strong evidence that moderate consumption is beneficial.
Its unlikely that you will grow cannabis that will have the desired effect consistently. The other thing you don't mention is what are the long term effects?
There are many as we are finding out now that its use is more wide spread.
Added a link for a quick review of common issues
verywellmind.com/long-term-...
Lower IQ. No thanks
RonnyBaby• in reply to
A lot of zombies are the givens for those that aren't aware or don't care.
It is well KNOWN that users under the age of 25 are doing brain damage if they 'imbibe' irresponsibly or even casually according to 'stats'.
The problem with SOY ?
The main one is the 'estrogen' type of chemical/ physical response. when you mess with hormones and PCa, you are upsetting a delicate balance. The link has been stated as a direct link, but differing points of view and medical opinions makes it a confusing topic to understand fully.
The fact that there is ongoing debate is what concerns me. I'd be more than happy to 'consume' if the controversy was gone ...... even in moderation ....
• in reply toRonnyBaby
American Cancer Reasearch Association opinion on soyaicr.org/resources/blog/soy...
Why would that organization take this position?
RonnyBaby• in reply to
I read the WHOLE article and note several comments / statements that were made - a LOT was about prevention and risk factors - a lot of it was statistically insignificant - which is a GOOD thing - 'do no harm'.
The majority of the content was NOT about men with advanced PCa.
There were a lot of Mights and could BEs and Maybes - but little that was clearly definable one way or the other. That is part of the problem with a lot of 'study' papers - it would be nice to nail it down - and how BIG is/re the sample group(s), in terms of numbers - I have found that the links between breast cancer and prostate cancer are limited and seem to grow wider based on what I've read of in the past 3 years - both are cancer and there are some similarities but there is MORE progress in treating breast cancer than prostate cancer, so something significant is evident and differentiates the two.
Another - the article is about 2 years old - there is a lot more that has been written since.
So, I will 'ack' that you've pointed to a credible source but also note that it is far from complete in terms of calling it THE source to rely on as CONCRETE proof.
I conclude that it is still unresolved BUT there is a suggestion that there may be NO harm done in MODERATE cases of consumption - so that would be GOOD thing to extract from it. There is also some commentary about HOW it is processed and what is left after the fact.
There is still in vitro vs in vivo in 'mice and men' and no large scale 'controlled' study or trial has been completed on this topic that would put the whole notion to bed.
Hopefully at some point in time, in the not too future, something conclusive will be the resultant.
In the meantime, moderate consumption does not appear to be 'dangerous' dated Feb / 2019 - just a bit murky, so I'll pass, for now ....
• in reply toRonnyBaby
Provide a link to an article about soy consumption that has the word WILL cause cancer.
RonnyBaby• in reply to
I would have to search for it to be specific - I can tell you this - it was on Tall Allen's blog a few weeks back and it was about the 'steins' / isoflavones - not soy beans.
What people look for is the 'extracts' or active agents in supplements and the 'steins' are part of that group.
I have chosen to pursue this topic with you because you have at least been very civil about it and I suspect you would like to find out more about the most recent studies / findings to help you decide if it is right for you.
I owe it to myself to be able to become more familiar with finding quick links to the blog - because that is the place where I have found a lot of content to consider.
I have been 'lazy' in terms of providing links because, for me, it is more about the big picture and I have tried to not be a source for all things PCa or defender of the cause(s).
I do venture to comment, when I see statements made by individuals that MAY not be quite accurate up to date with NEW revelations e or that might not be in their best interests.
IF you are not that familiar with T_A's blog, I would encourage you to go there and use the SEARCH functions or consult some of the archives. There is a wealth of information there that should be a MUST read for many PCa patients and advocate / caregivers.
I have a date this PM that will take up the rest of my afternoon (a card date that is - I am a bridge player -using my SAME alias there as I do here.)
IF you've ever had your butt kicked on BBO by RonnyBaby, it was my doing .
Bridge keeps the brain active.
C U at the table ......
• in reply toRonnyBaby
Nope. TAs post was about over consumption. I pointed that out to him.
• in reply to
I would add one final comment.If I thought consuming 1-2 cups of soy milk a day would exacerbate my pca I would stop immediately. The evidence just isn't there. Association and evidence is not the same. Example, there is evidence that driving over the speed limit leads to higher incidents of accidents. I still drive over the speed limit despite that association. I'm just not that concerned.
• in reply toRonnyBaby
All I'm doing is pointing out that you apply two different standards to soy and cannabis.
I really don't care if you eat soy or not. Same with cannabis. Do what you want but be honest and apply the same methodology otherwise your biased and lose credibility.
There is an association between moderate soy consumption and reduced pca incidence. There is no evidence that once you have pca it makes it worse. There is evidence that over consumption is associated with advanced pca..same could be said of cannabis with other illnesses.
Your message is meaningful and thought-provoking. Part which I agree most is that it is CBD which is helpful and THC is useless . THC can cause impairment in attention and concentration, impotence, sterility ,psychosis and panic attacks in many people.CBD does not cause such problems and is an effective anti inflammatory substance which reduces C Reactive protein, a marker of overall inflammation in the body. Keeping inflammation as low as possible is one of the things which slows cancer growth.
we do not know what will be consequences of continuous suppression of natural endocannabinoid system of young brains. Possibly, they will lose their capacity to produce natural pain killer substances coming out of brain and will permanently have to depend on Marijuana.
• in reply toLearnAll
We know that many treatments start with plant extracts. This is well established. We also know that these plant extracts need to be carefully engineered to have a consistent and predictable effect without cause deleterious effects on the person being treated. I'm sure some treatments will come from cannabis but I'm not so sure it will be for cancer.
Comments and observations appreciated - I pay attention to the excellent ongoing content you provide within these forums as well.
It's not about agreeing with everything - it is about learning and keeping an open mind about SOME of the topics presented.
Everyone can spot the looneys ....
That's really funny, I not angry at all what are you talking about. No drugs on board, just sharing what I know 6 years given 90 days 3 years ago, done naturopathically, you seem to be upset that I disagre, stop the bs.I can tell being right is very important to you..?
pleasure I won't give you the pleasure. Don't talk to me you are toxic.
thanks
As a person on AS I cannot speak from personal experience. Bu follo this and other sites to learn in the even I need treatment. Anyway you have to be careful about changes in PSA. Though it is a good marker for cancer progression in treated people there and I understnad there are times when there is not a direct correlation. example as others have said PSA FLARE. you are treating the cancer not the psa so if you have scans indicating tumor reduction inspite of a rise in PSA it is a good thing. A big help is an understanding of the history of a particular treatment and follow through untill it is clear that for some reason you are the exception. This is very complicated and we are all individuals not statistics. best of luck-rember not an expert just a regular guy inserting his 2 cents
wish you the best
I use mistletoe hang it in the doorways during the holiday season. Great way to get a kiss ........
Lol
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