I had a BCR in Nov. 2019 = PSA 0.3, My PSADT is 1.8 months. My MO wants to start me on Casodex a month before my first Lupron shot.
My 12/28/2019 bone scan results are due next week. If they're clear, MO wants a PET scan to see if it's in soft tissue.
Is this the way to go?
Thanks
PSMA PET/CT?
Lupron actually causes an initial surge in testosterone. This causes your body to shut off all natural production of testosterone (negative feedback), so that within a couple of weeks, your serum testosterone gets down to castrate levels. But the large amount of testosterone initially can aggravate existing metastases, so the Casodex blocks cancer cells from using any of that testosterone.
You may want to discuss with your MO what he would do differently if he finds cancer in soft tissue or if he doesn't.
I think so.. but I’m not a dr.
I would listen to your specialist, and there is in fact SCIENTIFIC RESEARCH to support starting on Cas ahead of lup. I have seen the results of tests and the only answer to give is why would one want to increase test if one can take the meds in a different order? Exactly, common sense plus you doc supports this measure.
You should stop giving false advice and information on this site. I find it increasingly offensive that you spout your alternative medicine, for which you have made a nice pile of cash in doing, to those who come to the site. the fact is Na, you are alive because of using traditional medical treatment, yet you repeatedly spout forth the falsehood accompanying naturopathic rubbish.
Pretty harsh Billyboy3. While I agree many of Nal’s musings are not fully vetted scientifically, many do have logical basis for potential benefits. Most of us welcome different ideas along with opposing views of potential dangers of various supplements so we can try and make educated decisions. I for one do not follow most of his protocol but a few make sense and appear to have limited downside, so I try them. I always first discuss with my MO. You state he “makes a nice pile of cash”. I don’t understand. Why would you think he is espousing his views for personal benefit? That’s a big and ugly step from simply disagreeing with his points of view. He never advises to stop or avoid SOC. To be sure, I’ve not seen any indication at all that his motives are anything but pure. The opposite in fact. Please explain.
Schwah
First, this site is very sacred to me. As a long time PC survivor, now going into year 20, and having spent considerable time in assisting and watching many, far too many men die of PC, I believe that I have to take a stand when anyone is making statements and by virtue of putting them on this site, are creating situations where the lives and longevity of those who enter and read information, may be adversely affected.
The fact is, in my opinion, is he is making claims that cannot be supported by scientific processes, first, is promoting alternative chemical treatments that are NOT supported by facts, and in doing so, is potentially harming others.
I also do not like his repeated mantra of not giving medical advice, when in fact he is doing exactly that. He states many times to not giving this, yet continues to do so in a forum where many are desperate and will believe, or want to believe anyone who professes to have some magic for them.
He has stated that he is a naturopath, and that industry is full of those who make similar claims, but have no scientific support for them, but act as though what they espouse is true and supportable by research, trials and proven testing, none of which is true.
When people come onto this site and make claims, they should be able to support them by proving their words are fact.
I have watched men as well as other family members, DIE, who were led down the path because they were vulnerable and are in a position of being taken advantage of or being mislead.
I will state clearly, If someone is trying to get you to take some supplement or other treatment and cannot provide scientific supported documentation as to the rational for this product, then they should NOT be doing so on this site.
A major problem with alternative chemicals being offered, is that there is no testing of the person, i.e. no blood or urine or other tests to show what a person is deficient of/in, then how much they need to bring about balance, and for how long this product should be taken for. IT IS ALL GUESS WORK and can be very dangerous.
In the case of advanced prostate cancer men, adding to taking some concoction can have devastating negative impact on one's body, so extreme care must be taken to prevent this from happening. You CANNOT do this unless you know what each product will do, how much is needed and for how long, nor be able to determine what impact it might have with other medications that one is taking.
In other words, a turkey shoot at best, and back in the old days, the term snake oil salesman was used.
Those who come to this site, have a right to expect better, and we, especially those of us who have been at this a long time, need to stand up for the newbies and make sure that they are NOT led astray.
When those who are espouses that one take all sorts of chemical additives, yet are themselves on our standard scientifically proven medications, that should and IS cause for concern.
Our group studied over 30 alternative medical practitioners who all stated being able to cure cancers, but in our review of over 900 files, we could not find even one case, where this happened. Shocking to say the least, that their offices were full of those in need for the very illness that they could not cure but took $$$ and in some cases, lots of it and the last of what these people had, but had nothing but smoke and mirrors to show for the bs they shovelled.
It was difficult to write this post, but it needed to be said. Take whatever you want for pain control, but that is a very different story then professing to cure or keep PC at bay, as the recent posts have clearly stated, as being the case for some who are or have taken weed in its various forms. Total rubbish.
I
Your post is so well articulated. It is evident that you put your heart felt feelings as well as FACTUAL premises in composing it.
Bravo
Thanks, I am being attacked by Nats for confronting him on this, but nobody should be presenting any treatment for advanced prostate cancer that cannot stand the rigours of scientific testing. Too many rely upon what they read on this site and we must ensure the highest of standards are maintained in what is allowed to be presented as fact, when there is no evidence to support their usage for the treatment of advanced prostate cancer.
Thanks for posting this response. Nalakrats intends no malice and in fact he is always trying to be helpful and honest in his postings. I want to read all opinions and experiences on this site, including those who are using dewormer, herbs, other supplements, traveling to Mexico, whatever. I will make my own treatment decisions in consultation with my care team. Having this broad variety of opinions is very helpful and keeps the humanity in what can often be a very sterile, clinical experience for all of us.
Don't accuse someone unnecessarily of "giving false advise" For you it may look false but there are members who think his reports are not false..and in fact valuable and usefull.
If you donot like his opinion, just donot implement..He is not forcing you to do anything.
How do you know he made a pile of case...do you have any evidence? Your statement amounts to libel. Go and check the meaning of libel in legal dictionary.
I stand by my position if you cannot provide scientifically tested results for any medical treatment, including and and all chemicals and drugs, then one should NOT be making claims or recommending them to others. That is in my view, practising medicine without a license, at the least. In the case of those who come to this site and in the worst of possible circumstances, we have an obligation to stop this from happening, in order that they do not believe or follow these ad hoc home remedies instead of following the regime that their medical doctor team have prescribed for them.
See my last post, and ask any cancer medical specialist of what one of there major headaches is, and also a waste of their valuable time, is having to deal with those who bring these scraps of nonsense alternative treatments as some fact or saviour, i.e. magic pill. to them and have the battle to try to keep their patient from going off the deep end by listening to some snake oil salesman.
There is no cure for advanced prostate cancer at this time nor any treatment that prevent it spreading, i.e. there is no chronic ailment type treatment, and anyone who states that they can or have done so, is NOT telling the truth.
BullyBoy,
You should respect other peoples opinion as we respect your point of view. In USA, nobody can stop somebody from expressing opinion. Freedom of speech is basic fundamental right in our country...get it Bully Boy.
If what someone is stating on this site as a fact, when it is anything but, I resent that because of the harm that this can do to others. Spend some time with end stage guys for five plus years then come back and tell me that we should ensure that men have the facts of how to fight the battle, and not be led astray by these falsehoods.
I have put in over 20 years in service to men with PC, so have earned the right to challenge anyone making claims of treatment that are NOT supported by any scientific measure.
This site owes it to the newbies to ensure we do not do harm or create false impressions or treatments that are not proven to work.
You say that we need to ensure that we do not “create false impressions” and that we should not state a “fact when it is anything but..”. Yet it appears that’s exactly what you are doing now by stating that Nal is somehow “getting a pile of cash” by stating opinions but providing no evidence of such. Please address the “elephant in the room “ that you keep dancing around. Do you have anything at all to back up That claim? If not I urge you to correct it and apologize. To say you strongly disagree with someone and that you think their ideas are wrong or stupid or dangerous and why, is a service and welcome here if that’s your opinion. But that’s far cry from claiming they are committing what’s tantamount to a fraud. As stated earlier, that’s libel, if not true. If true, many here wish to know as that would taint his opinion without doubt.
Schwah
I stand by my comments. When someone is going against accepted medical practise, is constantly pushing alternative chemical compounds when there is no scientific support that they do anything to improve outcomes in terms of controlling prostate cancer, then that is serious in my book. Quoting the bible or noting anything in history is not scientific proof of anything, most certainly not when it comes to treating advanced prostate cancer.
The best outcomes are, as bad as they are, is to follow scientifically proven results and protocols, not rely upon the latest fad or some personal view, or home made remedy, or some other cocktail of compounds for which one has not the proof that they work.
Treating advanced prostate cancer is a serious issue, and there are no quick fixes, there are no alternative/complementary treatments that are scientifically proven to work by extending one's life and either cure or control advanced prostate cancer.
For anyone to suggest otherwise is not right and should not be condoned. Ask your specialist what they think of one spending huge dollars and trying these various magic pills, which in fact, may only make things worse, and equally important give people the false impression that there is this magic pill or formula.
Instead of his showing us what he states as fact, Nat attacks anyone who challenges him, as he has done most lately with me. I do not brag about how many followers I have, what my volunteer work has cost me or anything else. He then denounces me for standing up to him.
Further, I do not make public statements on this site advocating various compounds that will treat advanced prostate cancer, when I cannot back the results of using them has. The need to produce any proof of the effectiveness of these compounds rests with the person who makes the claims.
This is called the scientific method, used to ensure that people are kept safe and that treatments are actually proven to work.
Are you a politician? Is that why you’re so proficient at avoiding the questions ? It’s simple. DO YOU HAVE ANYTHING TO BACK UP YOUR ASSERTION THAT NALAKRATS IS GETTING “A PILE OF CASH”. That’s a critical fact that greatly impacts the perceived value of his assertions. If so, please elaborate. If not please say so. All of your arguments are reasonable and worth consideration here. It’s exactly the counter arguments us neophytes need to hear. However, including unfounded claims that you can not back up, is exactly what you’re accusing Nal of and if not true or well founded with fact, greatly diminishes your other arguments.
Schwah
I am not avoiding anything Schwah, it is not how I operate.
I have no problem in presenting the facts and my opinion on his numerous statements he has made on this site, although I am extremely busy and starting another round of drugs, this is important, so first:
1. I assume that you have discussed with him as to your being his advocate on his behalf in dealing with this
2. Please get him to post his agreement to this being held on this site and his agreeing to your being his spokesperson
3. I will restrict my responses as they relate to advanced prostate cancer and his statements in regard to same
Your turn
I have no clue what you are talking about. I advocate for no one here. I have no personal (or otherwise) relationship with Nalakrats. I’m just fair minded and wish to use this site to learn as much as I can to help Me fight this disease. If someone posting here is advocating treatments for personal gain (as you claim), people here need to know. Your refusal to either acknowledge that claim (with some evidence) or to back away from it, leaves many of us in the difficult position.
Schwah
you are correct, which is why I have no problem in presenting my case, as long as he is ok with it being on this site, simple. if he is not going to respond to what I am going to raise, as he has so far refused to do, then there is no point in this exercise.
I stand by my statement, "if you cannot produce a scientifically based study with back up documentation, then you have no right to make claims as to the effectiveness of any supplement, drug or whatever that you present on this site for treatment of advanced prostate cancer".
Nalakrats has personally helped (as he has done many others) without any obvious gain. He doesn't try to obscure his conventional treatments and doesn't deserve that kind of criticism.
My own experience upon BCR was Casodex alone. Kept my PSA low for two years before failure. I'm now on first Lupron shot accompanied by low dose Casodex. Am awaiting first PSA since Lupron.
Have you considered Abiraterone ?
I haven't, partially because I've just started on this protocol, have no side effects to speak of. However, I'm seeing my onco in a couple of weeks. So, I'll raise it with him then. Thanks.
Keep us posted. Good luck
More ways than one to skin a cat.....Has two large tumors to deal with....my OC started me on Lupron....when I went to my radiation oncologist he added Casodex for 4 months to help shrink tumors before Proton Therapy...Both docs at MD Anderson...
The issue is I have a problem with your giving mountains of bs that you cannot support by any scientific approved processes and the harm it can do by your doing this.
That's exactly the way I was treated. After 6 months on Casodex, my MSK MO switched to Zytiga and prednisone.
I'm due for my sixth quarterly Lupron injection next month.
Best
FYI - I was started on a loading dose of Degarelix which reduces testosterone to castrate levels without the flare of testosterone ( agonist versus antagonist) .- I was switched to Lupron one month later . Not recommending just informing as I was diagnosed 7 years ago
Yes , usually you are given Casodex for prevention of hot flashes and other side effects due to hormone deprivation which will be caused by Lupron and your doctor waits if you fortunaley doesn’t have bone and visceral metastasis maybe he won’t prescribe you Lupron for so long .Hope your test results are clear
I was not given the choice of casodex. I have never had my testosterone tested. I have never had a bone density test. It's been almost three years. I sometimes feel neglected. But things are going well right now. Wishing you the best.
PSA went from 1340 to 2.4 in 2 months on Lupron and Casodex 50 mg
Casodex and Lupron
Casodex query 
Stop Casodex if on Lupron and Zytiga?
