For recent posters searching for sugg... - Advanced Prostate...

Advanced Prostate Cancer

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For recent posters searching for suggestions as to where to go next... to treat advanced mCRPC / metastatic and oligo-metastatic PCa

George71
George71

There have been several posts recently by people searching for suggestions as to where to go next... to treat advanced mCRPC / metastatic or oligo-metastatic PCa that is CRPC or still hormone sensitive ( ie. 5 mets on imaging – The definition of oligo-metastatic PCa has since been expanded to include up to 10 spots).

Dr. Kwon @ Mayo Clinic Minn. may be just the man … As the video shows – he has in effect virtually cured (No Evidence of Disease) many people with the above described conditions … which is virtually unheard of... It is worth a look --- watch to the end – the question and answer section covers a lot too. I am a registered patient of his since 2017 he will not give me the coline scan till my PSA reaches 1.5 --- He doesn’t think radiating in the dark when PSA is 0.2 or even 1.0 is as effective as waiting till the cancer shows and radiating and removing the spots. He is going for the kill – No Evidence of Disease – with normal testosterone levels – off all hormone therapy chemo etc. And when they came to him many were already mCRPC - metastatic or oligo-metastatic PCa

youtube.com/watch?v=60P98QL...

84 Replies
oldestnewest

This idiotic video is what I had in mind when I wrote this. Shame on Kwon.

prostatecancer.news/2017/05...

George71
George71 in reply to Tall_Allen

you should call him up and tell him T/A -- Call him and explain it to him -- I'm sure you can set the doctor straight on this. Tell him to stop talking at siminars about his successes and not to post videos on the web because T/A knows better.

Tall_Allen
Tall_Allen in reply to George71

Those aren't "successes" - they are just shrunken metastases after zappingg them - it's been known for over a hundred years that radiation can do that. What is unconscionable is that he misled patients to think that such treatment caused remission. Mayo is very weak in medical oncology (Kwon is not an MO). This demonstrates why.

BTW- Since he seems to be a friend of yours, please feel free to pass my article along to him. I have yet to meet a real oncologist who disagrees (and I have shown it to several, including the researchers of the 3 actual randomized Phase 2 trials that have been done)

George71
George71 in reply to Tall_Allen

T/A,

Why would I send him your article -- he is the doctor -- he would just laugh.

I should send him what you said about him:

"This idiotic video is what I had in mind when I wrote this. Shame on Kwon."

And,

"Those aren't "successes" - they are just shrunken metastases after zappingg them - it's been known for over a hundred years that radiation can do that. What is unconscionable is that he misled patients to think that such treatment caused remission. Mayo is very weak in medical oncology (Kwon is not an MO). This demonstrates why."

Tall_Allen
Tall_Allen in reply to George71

Then don't - you were suggesting I send it. Do as you like.

noahware
noahware in reply to Tall_Allen

If radiation happens to trigger abscopal responses, why could that not be said to be "causing remission?" My understanding is that when this does happen, it would be an example of local treatment having system effects, even if "cure" is too strong a word for that effect.

Tall_Allen
Tall_Allen in reply to noahware

Abscopal/bystander effects certainly do happen, but they are not even close to being what anyone would call a remission, unfortunately. Read this, for example:

prostatecancerinfolink.net/...

noahware
noahware in reply to Tall_Allen

If these effects are not even close to being what ANYONE would call a remission, then I would not be reading this in an abstract: "Localized radiotherapy is thought to cause anti-tumor immunologic responses that lead to regression and remission of cancers distant to the initial location of treatment."

Or this: "She received treatment with local radiotherapy delivered to the breast tumor and some of the bone metastases... 10 months after radiotherapy, spontaneous regression was observed, not only within the irradiated field, but also in the non-irradiated areas. All signs of cancer throughout the body disappeared..."

Tall_Allen
Tall_Allen in reply to noahware

I'm talking about prostate cancer. I showed you what the best results are that one can expect. Miraculous remissions do occur - but one would be a fool to build a treatment plan that involved a miracle.

noahware
noahware in reply to Tall_Allen

You write, "It should be clear that there is no possibility of a cure without systemic treatment. Currently, we have no systemic treatments that can cure metastatic prostate cancer. How long does it take to go from the first microscopic metastasis to the point where it is detectably metastatic? That's impossible to know with any accuracy for a given individual."

I am a bit confused about how men somewhere between "the first microscopic metastasis" and "detectably metastatic" might be considered curable. Is it only "detectable" metastatic prostate cancer that cannot be cured except systemically? Because unless I am mistaken, most men have microscopic metastasis at the time the PC become significant enough to be detected and subjected to the proposed cures of RP or radiation. Decades of evidence has suggested PC cells are disseminated ( that is, "in our systems") very early in the normal course of the disease.

It seems that you are saying systemic disease that can be seen (via scan) can only be cured systemically, but systemic disease that CANNOT yet be seen can be cured locally.

Or put another way, at what point does a disease that is already microscopically systemic, in reality, earn the right to get labelled as "systemic" for clinical purposes? Is that point arbitrary (as in, when able to be seen with current technology) or is there an objective distinction?

Tall_Allen
Tall_Allen in reply to noahware

We do know that metastatic growth and detection follows an exponential curve. As you know from covid-19, it is very slow at first (remember December to March)and gets rapidly as it multiplies (April onward).

I agree with you that men who are metastatic (M1, not N1) are not curable with current technology. You are entirely mistaken that metastases occur early. They do not. They are especially slow to develop in prostate cancer. Metastases are an entirely different beast from localized prostate cancer. Localized prostate cancer cannot live outside of the prostatic environment and cannot migrate outside of prostate tumors. Cells have to go through a change in phenotype, called EMT, before that can happen.

I am certainly not saying that men with systemic micromets can be cured. Wherever did you get trhat idea?

noahware
noahware in reply to Tall_Allen

"You are entirely mistaken that metastases occur early. They do not."

What I said was, PC cells are commonly disseminated ( "in our systems") very early in the normal course of the disease. To me, that is "systemic."

So there is "systemic disease" under way at the time the PC become significant enough to be detected, which is not all that early in the normal course of the disease . (My understanding is that a man has had cancer growing for many years by the time a tumor is palpable or throwing enough PSA to warrant RP or radiation.)

So I gather you are saying that even if many men may have PC cells already residing in the bone marrow by the time of RP or radiation, these PC cells in the marrow are not termed "systemic micromets?" Do PC cells outside of the prostate need to reach some critical mass before being labeled "micro-metastatic" or "systemic?"

Tall_Allen
Tall_Allen in reply to noahware

No. just because a PC is in the blood, does NOT mean that it is capable of metastasis. Everytime your prostate is moved (by sex, bicycling, biopsy,etc.), cells are knocked loose. That is an entirely different thing from metastasis, as I explained.

You are incorrectly making up things that you "gather" from what I'm saying, probably because you don't understand how cancer progresses. I suggest you learn more.

noahware
noahware in reply to Tall_Allen

Perhaps there are some definitional difference between "metastatic cells" and "micrometastases" but what I have learned seems somewhat counter to what you have said, according to these, among others:

" immunohistochemical staining of bone marrow aspirates can detect occult bone marrow metastases in patients with apparently localized prostate cancer"

pubmed.ncbi.nlm.nih.gov/751...

"Micrometastases were found in the bone marrow of 29 of the 55 patients (51%) with prostate cancer. Of the samples taken from 43 patients undergoing radical prostatectomy and with no evidence of metastatic disease, 19 (44%) had micrometastases. The development of metastatic cells to produce clinically significant metastases is dependent on... acquisition of the metastatic phenotype..."

pubmed.ncbi.nlm.nih.gov/752...

"Not all cancer cells that actively migrate to the blood show EMT characteristics" "tumor cells remain dormant in the bone marrow niche and thus viable for extended periods"

" samples taken after radical prostatectomy or radiotherapy had a lower frequency of micrometastatic detection [with] the inference of these findings that local removal of the primary tumor decreases or eliminates micrometastatic disease"

ncbi.nlm.nih.gov/pmc/articl...

What that last line appears to say is that LOCAL treatment might be having beneficial effect on an ALREADY SYSTEMIC disease. So might many men with "local disease" have metastatic PC cells already (dormantly) residing in the bone marrow by the time of RP or radiation, or not?

Tall_Allen
Tall_Allen in reply to noahware

You are misunderstanding what you are reading. In those case studies, they found that there were micrometastases in men who they thought had localized PC. It turrned out that those cases were not localized, as they'd hoped. Some men have distant recurrences after local radical treatment, but fortunately, that is not the norm.

noahware
noahware in reply to Tall_Allen

But that observation is not fully answering my questions or addressing my points. Is it not possible for treated men who don't have distant recurrences, that are clinically significant, to still have dormant micrometastases? In other words, I don't see why the failure of a systemic disease to manifest itself clinically would mean a man necessarily does NOT have systemic disease.

It would seem to me that anyone who has dormant micrometastases still has "systemic disease" even if that disease remains below the threshold of detection and does not require treatment.

From what I've read, even though it is not the norm for locally treated men to progress to the clinical form of "metastatic PC" it indeed might be the norm for men to harbor dormant micrometastases by the time of such treatment.

I have read that Coffey and Isaacs estimates of the average doubling time of PC cells mean it would take several decades for a single cancer cell to reach a clinically significant tumor, and that metastatic showers begin well before that point. Because metastasis is such a slow and inefficient process, it seems reasonable to conclude that it is more or less "normal" for the metastatic process to begin MANY years before even a hint of detectable metastasis.

Perhaps my confusion is in believing the initiation of the "metastatic process" is the same as the initiation of "systemic disease." Is the conflation of the two unreasonable?

Tall_Allen
Tall_Allen in reply to noahware

NCCN divides men into risk categories. "Low risk" means there is low risk of recurrence after radical treatment. Most low risk patients have cancers that will never metastasize. "High risk" means there is high risk of recurrence, mostly because the cancer may have already metastasized, albeit undetactably. This is why I hope FDA will approve the PSMA PET/CT for high risk patients. There is little point in treating high risk patients who have systemic metastases (othher than de-bulking).

It certainly takes years for cancer to undergo EMT. Then it takes more years for the metastases to prepare the soil. That is why it is so important to treat what one can't see.

Maybe give everyone a link they can click if they want to learn more? Do you have a website or a blog people can go to?

Hi TA. Please keep up sharing your knowledge. We appreciate your efforts.

Schwah
Schwah in reply to Fightinghard

Agreed. They make much more logical sense than the Dr. Keon video does...at least to me.

Schwah

To sum it up:

An oligometastatic “stage” probably does not exist. It is likely instead that the scenario merely reflects the current failure to visualize the full extent of the metastatic spread. Whatever the radiotracer employed, we will almost certainly never be able to localize sub-millimetric metastases. It is therefore highly unlikely that SBRT would be able to completely eradicate all tumor cells.

tcr.amegroups.com/article/v...

noahware
noahware in reply to gregg57

I don't think the point is to "eradicate all tumor cells" so much as to achieve what gets closer to "remission" in practical terms. In some cases, the abscopal effect appears to do that. I for one am perfectly happy to share my body with tumor cells if they are not going to cause me any pain or symptoms or keep growing in a way that kills me.

gregg57
gregg57 in reply to noahware

The practice has to at least result in a longer OS. As far as I know, no Phase 3 trials have proven that.

If there are some and I missed that, please direct me there. I'm not trying to prove anything.

noahware
noahware in reply to gregg57

I think Kwon addresses that. He does not appear to claim this works in all men, or even most, but that it APPEARS to work, some of the time. He suggests those who oppose the attempts prove to him why he shouldn't attempt it (other than it costs money) and detail the potential harms.

Are you of the mind that virtually nothing new (or old!) that is "unproven" should be attempted outside of clinical trials, and the only way to "prove" the thing is by having clinical trials. First, that this "has" to be so is an opinion that not all men share. And second, that level of proof means that perhaps 90% of what "might" work is off the table, because there will NEVER be the money or profit-motive to do trials.

Realize, I am not saying there is some conspiracy by drug companies and doctors. It is simply a fact that money HAS to drive the process, because it is a very expensive and time-consuming process. So if one does not accept the limitations of this system, he has no choice but to rely on lower-level evidence (observational, mechanisms, supported hypothesis, etc.). That YOU want to accept the limitations of Phase 3 statistical significance does not mean everyone else wants to, or "has" to.

gregg57
gregg57 in reply to noahware

Of course I understand that people can do whatever they want, that's their prerogative. All of us have to weigh the benefits of any treatment against their side effects and QOL issues. This not only applies to unproven alternatives, but unproven conventional treatments as well.

Personally, I like to evalaute my treatments on this basis, but I realize that others don't.

It looks to me like with the existing evidence we have at this tme, playing wack-a-mole with smaller moles has not proven to be beneficial in terms of additional OS. Maybe that will change in the future.

noahware
noahware in reply to gregg57

"playing wack-a-mole with smaller moles has not proven to be beneficial in terms of additional OS"

That is correct. The point is simply that a lack of proof of something existing is NOT the same as proof that such a thing does not or cannot exist

gregg57
gregg57 in reply to noahware

So you do agree that it is not proven.

noahware
noahware in reply to gregg57

Of course, in terms of statistical significance in clinical trials. But I find even THAT form of proof to not always be useful to a given individual, who is not always a reflection of statistical aggregates that can never take into account all the variables at play. I look at some survival curves showing median survival benefit and think, what has really been proven?

gregg57
gregg57 in reply to noahware

I agree that clinical trial data is not perfect proof, just as our SOC treatments are not perfect treatments.

They are however, the best we have and that is important. We can't let the perfect be the enemy of the good.

noahware
noahware in reply to gregg57

Except in deciding how "we" choose treatment, it stops being "we" and starts being "you" and "me." If I like, I CAN let the perfect be the enemy of the good in choosing my treatment paths, and it has absolutely no bearing on what YOU do or on the course of science, medicine, or the treatments that others choose.

When someone, say, rides a bike without a helmet he is in no way "forcing" that type of behavior on anyone else. Could someone else see his behavior, and decide it appeals to him, too, and then put himself at greater risk of death or injury? Of course. So?

gregg57
gregg57 in reply to noahware

The problem is when someone makes a claim that riding a bike without a helmet is safe. That's where the problem is. As long as the risks are understood, the rider can make an informed decision.

Tall_Allen
Tall_Allen in reply to noahware

Actually, I do advocate zapping distant metastases, but only when it is safe to do so (certainly not metastases in or close to the mediastinum), and in addition to not as replacement for systemic therapy. That's because I don't know if there is any benefit. The reason I called Kwon's 2014 video idiotic, is because he doesn't know either, and he misleads patients into thinking there is a known benefit.

gregg57
gregg57 in reply to Tall_Allen

I think it's important for patients to understand that systemic treatment is required for M1 PCa with distant mets. Radiation for oligometastatic patients is a not a substitute for systemic treatment.

Tall_Allen
Tall_Allen in reply to gregg57

Truer words were never spoken!

6357axbz
6357axbz in reply to gregg57

Am I correct in understanding that beyond radiation to prostate (debulking) and distant mets (MDT), and ADT (including abiraterone acetate), there is no effective systemic treatment currently available for mHSPCa?

gregg57
gregg57 in reply to 6357axbz

A comprehensive guide to the treatments for metastatic prostate cancer can be found here at the NCCN.

nccn.org/patients/guideline...

Tall_Allen
Tall_Allen in reply to 6357axbz

There is also chemo.

I’m at 3+ years and counting after Taxotere + “blind” IMRT of abdominal lymph nodes.

GP24
GP24 in reply to 6357axbz

healthunlocked.com/advanced...

6357axbz
6357axbz in reply to GP24

Thanks, I’m aware of Lu177 and chemo and immunotherapies and when appropriate will opt for one of those or anything better that comes along. None of these, however, as I understand it, has guaranteed benefits for a particular individual. It’s a crapshoot.

Tall_Allen
Tall_Allen in reply to 6357axbz

It's far from a crapshoot. The atatistics tell us what the average guy can reasonably expect. In fact, it is usually a bell-shaped curve with most guys clustered around the average. 95% of men will fall within two standard deviations of the mean (99.7% with 3 std deviations).They don't predict for the individual, but an individual will want to come up with a good reason why his expectations deviate from the average.

noahware
noahware in reply to gregg57

"Radiation for oligometastatic patients is a not a substitute for systemic treatment."

They are of course not the same thing that give the same results. As well as potentially beneficial for SOME individuals, both can clearly be harmful to some, in very different ways. So for either, one can weigh both POTENTIAL costs and benefits and KNOWN costs and benefits, because using radiation as an ALTERNATIVE to ADT (or in combination with it) could be preferable depending on one's subjective valuations.

Tall_Allen
Tall_Allen in reply to noahware

It is NOT an alternative. If someone wants to avoid ADT at all costs, that is certainly his decision. But he should not be deluded into believing that radiation can substitute for it.

noahware
noahware in reply to Tall_Allen

An "alternative" is the pursuit of one of two or more available possibilities. It is not implicit in the definition that one arrives at the exact same destination by taking the alternate route.

By your definition, "alternative therapy" is not an alternative!

Tall_Allen
Tall_Allen in reply to noahware

Alternative means it excludes the other. It is either/or. What I'm saying is that ADT and MDT are not mutually exclusive.

gregg57
gregg57 in reply to noahware

There is a difference between one's personal preferences and what has been shown to be effective. People shouldn't be pushing their own personal preferences over proven science.

noahware
noahware in reply to gregg57

What do you consider "pushing" to be? If I ask you if you believe in God or ever think about His existence, am I somehow "pushing" religion on you?

Perhaps some of us have a sort of intellectual curiosity as to how different things might or might not work, and in what ACTUAL doctors in the REAL WORLD (outside the clinical trial setting) are trying, and are interested in discussions about them.

But when Dr Kwon knocks on your door or sends you a brochure and tells you that you are going to hell if you don't radiate your mets, let me know!

ding - Ding - DING !!! R we at the end of round 1 yet??? BTW, I'm writing off my bilateral orchiectomy cause it makes my bicycle riding more comfortable and since writing off $70,000.00 for hair styling is OK?????

my opinion = youtube.com/watch?v=ZS1J3Vr...

by all means request removal if too offensive

It all depends on how someone Defines "cure" If we define cure as total absence of cancer cells in our bodies, then , not even healthy men will come under the term "cure" as even healthy men have some cancer cells in their prostate and in their blood. But the number is so little that these cancer cell do not cause any harm....UNTIL.. they multiply and form colonies and at some point get so well organized that they create their own blood vessels (angiogenesis) and start using Glucose as their main food.

To me, "Cure" is a very long remission ..because our life is finite. If a person has mets at age 70 and he goes into long remission of say 25 years, that is practically "cure".

My main objection to this video is that Dr Kwon is trying to terrify PCa patients by emphasizing that people with zero PSA have mets. This is "very Rare" but the video seems like a marketing tactics to make people unnecessarily alarmed.

I request our 11000 fellow members to tell us ' Do they personally know any man who had ZERO PSA and mets were seen on scans ?

It's possible but it happens in one out of several million PCa men. Very rare Indeed ! Dr Kwon has carefully picked up a few such rare scans out of 10 + million scans in Mayo Clinic's Scan data base to scare an average PCa patient.

noahware
noahware in reply to LearnAll

I don't think he is emphasizing that it would be COMMON for a zero PSA man to have mets, just that it is an extreme example of the fact that PSA is not always a good proxy for progression.

I think he does make a very good point when he asks why you would want to subdue cancer activity (say, with Lupron) right BEFORE you go looking for the cancer with a refined scan. My impression was, he was saying that the goal of low PSA via therapy that puts the cancer "to sleep" serves to make it harder to see.

And I would ask, if a man has mets that are put "to sleep" with ADT, does the fact that they are sleeping mean he has "no mets" or just "no ACTIVE mets?" Kwon seems to be saying, they may LATER wake up in different spots, and the different areas of micro-mets might have different PSA expression and different reactions/resistance to the treatments.

LearnAll
LearnAll in reply to noahware

"Cancer cells are sleeping" analogy is not accurate. Cancer cells literally gets killed by lack of testosterone in men who have almost total androgen dependent cells.

"sleeping" is an over generalization of the fact that in different men, different amount of cancer cells might still remain alive with a potential to start growing again in future.

I agree that every man has different percentage of Fully Androgen sensitive cancer cells ,ranging anywhere from 99.9% to 10 or 20%. More androgen sensitive percentage ..better..as they can be killed more easily . Milder type cancer cells keep producing lot of PSA as they are still like normal epithelial cells of prostate. What I mean is they are like civilians who are still doing their primary job but starting to learn some criminal activities. That's why in general prognosis for 3+4=7 is better than 5+5-=10. as the former is less distorted cells from normal. Many PCa are INDOLENT means slow growing...but some are very very aggressively growing. Every man's PCa is unique when it comes to degree of aggressiveness. My Primary care doctor told me that her father lived with bone mets for 24 years (up to age 90) and only treatment he got in those 24 years was Lupron . No lutamides or Abi were available then and radiation he could not afford. This is an example of an indolent, metastatic PCa.

noahware
noahware in reply to LearnAll

I guess I think of cancer more as an "ideology" than as a collection of cells. So in the way that killing many/most terrorists does not really "kill" a group like ISIS (because its ideology lives on, to find a new form), I tend to think that destroying a bunch of cancer cells is not the same as "killing the cancer."

So it is not the cells themselves that are "put to sleep" because they are indeed killed. But the code for the cancer still remains in our system, dormant but often likely to reemerge in a different manifestation. We killed the cells, but not what was driving the cells. That is one of the reasons we need to watch inflammation, stress, sleep, etc,. even in times of apparent "peace." We can at least try to withhold some of the fuel helping drive the next attack.

LearnAll
LearnAll in reply to noahware

This is more a matter of semantics than real difference in what we are telling each other. If ISIS is degraded to such an extent that they do not have any more capability to cause harm to anyone...their bloody ideology can survive.. but who cares?

The later part of your message I fully agree with ..about keeping inflammation very very low, eating right kind of food, doing plenty of physical activity and judiciously using dietary supplements , relaxation and outlook to life etc. Lets remove focus from language semantics and get the crux of the matter. We agree more than we disagree on this. Gotta go to work now.

How do you watch inflammation?

The best blood test to monitor systemic inflammation in body is called " C Reactive Protein" (CRP)

This is a protein in blood which tracks what is the extent of inflammation in your body at a given point of time.

Normal CRP values are from 0 to 8 in books. But for PCa people, CRP should be kept below 1.0. Lower the better.

CRP can go up in many medical conditions ....In covid-19 cases CRP values skyrocket to 15 to 40. In Diabetes, in infections too CRP goes up. Treating infection ,keeping blood sugar down and eating lot of anti inflammatory vegetables, herbs, spices etc can bring CRP level down.

It seems to me -- (just my opinion) if I ever get to CRPC and am facing the possibility of only a few years left -- I will be going for a doctor that will keep trying to find it and knock it out like Dr. Kwon.

I think many (if not most) Dr.s do the SOC to be safe from criticism -- once CRPC, they are treating their patients palatially -- unlike Dr. Kwon ---- he keeps whittling it down and fighting back -- and pulls some of these men out of the fire and saves their lives ( who likely had only months to live) ... I for one am really thankful there are Dr.s like him --- who won't give up on us.

Only God knows.

Some people get immediate treatment and are for all practical purposes "cured" at least for 7 or 8 years - (40% of the time it comes back on them anyway) In their cases radiation was well worth it - in my opinion. - others unfortunately do the same treatment and are gone in 2 years ... others find out they have it when they are within months of passing and had done nothing about PCa their whole life.

I had a friend who passed recently at 95 was driving his truck till 2 years ago when he couldn't see well enough ... fell ill -- taken to hospital --- discovered PCa through out bones --- died of heart failure in the hospital. He had pacemakers for over 10 years.

My grandfather almost certainly had advanced PCa when he was 62 via rectal exam ( felt large knots on exam. ) -- but refused to do anything -- said all his friends who went in the hospital never came out... ....he found out for sure when he was taken to the hospital when he was stung by 7 or 8 wasps while mowing his yard with a push mower at 86 years old. He passed on at 86 --- 1 month short of 87. it was in all his bones and colon... He had absolutely no treatment of any kind and apparently lived 24 plus years with it -- spread all over. There are studies that show that those that do nothing live within a year of those who have it treated ... may be because -- in some cases -- the treatment sets the cancer on fire -- rather than leaving it in a more dormant state. Each person responds to treatment differently as Dr. Kwon acknowledged in the video -- one patient of his had his cancer explode on him when radiated ... Obviously he isn't saying don't get radiated in cases where a Dr. thinks it will benefit the patient (either slow or kill the cancer -- at least in the one spot ... all treatments have successes and failures.)

As I have noted in prior posts my father is 101 and still alive in Austin Texas radiated when he was 63 -- no ADT -- nothing --never went back -- two uncles one lived to just over 100 and the other to 97 both radiated and never went back... Judging by the statistics of todays most advanced radiation treatments and drugs -- there is still nearly 40% recurrence after initial attempt at a definitive curative treatment within 7 years -- so it is highly likely my dad and uncles had it still going on too, after their relatively low dose fuzzy radiation treatments. And who knows it may have got them -- but something will get us all --- even those without cancer pass on from something eventually .... the goal for me is to slow it down -- if you slow it down to a crawl at any stage - you are -- for all practical purposes cured !!!

Tall_Allen
Tall_Allen in reply to George71

Doctors practice SOC because it is very good. Phase 3 clinical trials are usually randomized to the new intervention vs. the SOC. How else would we know if it works? This is what Kwon/Mayo has failed to do, and why his "gee whiz" pictures are deceptive.

BTW- every RO I have met will zap metastases if asked, if safe. No need to go to Mayo where they try to sell patients on their outmoded C-11 Choline PET scan.

George71
George71 in reply to Tall_Allen

T/A --- You are certainly entitled to an opinion..

My only concern is with the discrediting statements you made just now, and earlier about Dr, Kwon – Mayo Clinic, C-11 pet scans – and the procedures their oncology dept employs -- claiming they are deceiving their patients etc. If what you say is the case Dr. Kwan and Mayo Clinic are defrauding the public with false claims of success.

Dr. Kwon 's procedures set back or virtually cure (in some cases for all practical purposes) very advanced PCa. It is not SOC. in many of these patients SOC has already failed.

But, if you really think they are as incompetent as you said they are -- you should call them and tell them what you are saying about them ... (a) you are claiming they are unqualified -- (b) deceiving their patients -- (c) using poor equipment (d) Mayo Clinic is weak in oncology (e) Dr. Kwon is merely a Dr. in urology not a MO .... Etc etc --

The list of reasons you give for how deceptive and incompetent Dr. Kwon / the world famous Mayo Clinic and their Onc. dept. is, seems ironic coming from you -- a blogger with with no medical degree in anything -- redirecting everyone over to you blog site and an article you wrote denouncing their work.

Here are you comments -- I am addressing:

"This idiotic video is what I had in mind when I wrote this. Shame on Kwon." (and then you divert everyone here to you personal blog page and an article written by you – a blogger with no medical degree in anything)

and your next comment:

"Those aren't "successes" - they are just shrunken metastases after zappingg them - it's been known for over a hundred years that radiation can do that. What is unconscionable is that he misled patients to think that such treatment caused remission. Mayo is very weak in medical oncology (Kwon is not an MO). This demonstrates why. "

and then you said :

"The reason I called Kwon's 2014 video idiotic, is because he doesn't know either, and he misleads patients into thinking there is a known benefit. "

and just now:

"This is what Kwon/Mayo has failed to do, and why his "gee whiz" pictures are deceptive....No need to go to Mayo where they try to sell patients on their outmoded C-11 Choline PET scan."

Tall_Allen
Tall_Allen in reply to George71

"Dr. Kwon 's procedures set back or virtually cure (in some cases for all practical purposes) very advanced PCa." They do not. There is nothing in that video that shows that. This is the problem - that you, as a patient, walk away from viewing that thinking that it does show anything of the kind. Your ignorance is forgivable, his is not. My interest is in protecting patients like yourself who are entirely being misled.

I know what I wrote, and I stand by it. It is explained why I said those things in the article. You apparently did not read the article, reflecting your avoidance and willful ignorance. That will be to your detriment in the long run.

George71
George71 in reply to Tall_Allen

Thank you for forgiving me for being so ignorant as to listen to Dr. Kwon at the world famous Mayo Clinic instead of you. But I have trouble understanding why you won't forgive him for being ignorant too ...Hopefully you can see why I might believe him -- after all he is a doctor --- its not like he is just some untrained web blogger with no medical degree in anything.

Ps. thanks but, I don't need you to protect me from Dr. Kwon and the Mayo Clinic .

Tall_Allen
Tall_Allen in reply to George71

That's what makes the youtube video he made so dangerous. By virtue of his credentials, it dupes people like you into believing things that are not true and into therapies that are dangerous. I hope you will read the article explaining it and will avoid being led astray.

My interest is in patients. Please feel free to contact him if you want to.

My objection to this video is that it shows images of patients just after the radiation and of cause SBRT has eradicated the visible mets. Certainly this caused a drop in the PSA value. However, Dr. Kwon should have shown images taken one or two years after the radiation as well. This would have shown that all patients had a recurrence.

All the trials that have been done so far show that radiating the mets can delay the tumor progression but not cure the patient. E.g. the STOMP trial showed a delay of 8 months before ADT had to begin.

ascopubs.org/doi/full/10.12...

I think 8 months is beneficial and makes the treatment worthwhile but it is no cure. I also would add six months of ADT after the radiation according to the GETUG-AFU 16 study. And then start with a holiday of an intermittent ADT.

TheTopBanana
TheTopBanana in reply to GP24

Only six months?

GP24
GP24 in reply to TheTopBanana

My observation is that recurrence is delayed when you combine metastases directed therapy with ADT. Therefore I combine it with six months of ADT. This is in analogy to the GETUG-AFU 16 study I mentioned:

thelancet.com/journals/lano...

He states radiation does not always kill all cancer in the radiated area. My radiation oncologist states he has never seen cancer return in any area he radiated.

I wish he would have clarified what other treatments patients had before finding o-metastatic sites with undetectable PSA.

His philosophy seems to be 1) let it grow until it is big enough to see on a scan and 2) when you can see it on a scan, use every tool in the toolkit. That makes sense to me on surgery, but not necessarily on radiation, and certainly not on Taxotere. My cancer has not been visible since RP. Post RP, I got a 7.5 year remission on IMRT of the local bed, and am 3+ years into remission after IMRT outside the local area + Taxotere.

I view Pca as an oppressed population that keeps trying to rise up, and I need to beat it back down each time it succeeds. Hope that analogy doesn't offend anyone - human oppression is evil but omnipresent which makes it a good analogy in my mind.

George71
George71 in reply to ron_bucher

Ron,

Did you have undetectable PSA for 7.5 years (excluding the short ADT at time of IMRT? )

Any side effects from IMRT -- I would say what ever they were it was worth it..

ron_bucher
ron_bucher in reply to George71

I did not have ADT with my first IMRT treatment, and yes my PSA went undetectable for 7.5 years. I had ADT only when that remission ended (PSA started doubling every 6 months at 0.06) and I started Taxotere followed by the second round of IMRT (on lymph nodes outside the local area further up the abdomen).

George71
George71 in reply to ron_bucher

That's great results -I'm happy for you... I'm thinking about salvage radiation also -- I'm really pretty big on radiation over almost everything else -- it flat out kills it ... and you avoid life threatening surgery .. although as you may know -- I did surgery to avoid 2 years of ADT. (that was what they recommended at the time 2016) I begged them for 6 months ---. My wife and son said get a three month shot - get radiated and stop taking the shots -- I could have done that but I just felt bad about doing it that way.. I figured if radiation was meant to be at that time , God would convince them -- I told them about my dad and uncles -- no radiation -- it didn't matter ... they were hell bent for 3 years of ADT. So i went with the surgery Dr. he said he was confident he would get it all with no ADT. I found out the lymph nodes had it in them -- otherwise I would think I was cured --- I would still have my prostate and it would give off some PSA and its just now gotten to 1.37 -- four and a half years later. they are offering radiation of prostate bed and 2 chains of near by lymph nodes with no or 6 months ADT... they said 80% 5 year BCF with 6 months ADT or 65% chance of BCF at 5 years.

I have heard that radiation with no prostate is likely to have more side effects than if prostate were there. colon / bladder issues maybe.

ron_bucher
ron_bucher in reply to George71

The spacer (Space Oar?) used for external beam radiation is designed only for guys who still have a prostate, so radiation is a bit higher risk to rectal tissue after RP. However, my degree of rectal damage is extremely minor 12+ years later (no diapers but need to pay closer attention to the urge to go). I've always had complete urinary continence. I credit my doctors for my good fortune.

ron,

I've been told that also about radiation -- but that can't be entirely the case -- some people have recurrence in the prostate itself after being radiated --- and I suppose now and then they mess up and don't hit the area (patient moves maybe? ) not high enough dose gets on the spot ?

ragnar2020
ragnar2020 in reply to George71

George,

Take some time and research proton beam therapy (PBT) after BCR. Watch a few YouTube videos of Dr. Carl Rossi, and have a télé-med conference with him. PBT results in fewer long term SEs than other forms of RT. It is precision medicine. Medicare pays for PBT, and there are numerous guys on this forum who have used it for their BCR RT.

Jeff

George71
George71 in reply to ragnar2020

Thank you ragnar2020,

M D Anderson has it -- I will see what they say -- and watch the Rossi video you suggested ... As ron noted and I had heard -- radiation is a bit more risky after the prostate is removed .. so that is important to me. Do they do proton in 35 or so doses? or do you know... 35 doses was what they suggested @ M D Anderson.. 35 doses is also What Methodist Houston recommended -- and i'm not sure if Methodist has proton ... I originally asked M D Anderson if they would SBRT and they seemed to think 5 strong doses is too risky. Your thoughts?

There's no evidence to prove that Proton Beam Therapy is more effective or has less side effects than modern day IMRT photon treatments.

Here's one article but there are many others so people can do their own search.

healthandwellnessalerts.ber...

"there is no evidence to support claims that proton beam therapy provides improved cancer-free or quality-of-life outcomes when compared with less expensive alternatives like IMRT and surgery."

Here's another article:

news.cancerconnect.com/pros...

"For a proton center that has sunk $150-200 million in facilities and equipment, patient volume is its lifeblood. And, since “between 3 and 5 prostate patients can be treated in the time it takes to treat a single, complex pediatric case,” (2) it’s easy to understand why proton centers would want to recruit prostate cancer patients. But financial return is a not a medical indication for the use of a treatment, and research justifying such use has been sorely lacking: “Although radiation oncologists have been eager to adopt proton beam for prostate cancer, they have been slow to perform clinical studies.”(3)"

ragnar2020
ragnar2020 in reply to gregg57

Hi Gregg57,

That is incorrect, but like anything, there’s lobbyists for everything because there is money at stake. That’s why I just want guys to know that PBT is an alternative RT, and urge them to explore options. When they do their own research beyond what they see promoted here, they will benefit accordingly. Try it yourself.

Jeff

gregg57
gregg57 in reply to ragnar2020

It's not my opinion, I'm just presenting the information that's available. Sure it's an alternative, but not better.

If you'd like to present some clinical trial data that proves otherwise, please do. I do know enough about radiation physics to uderstand the theoretical appeal of proton beam therapy. I used to troubleshoot and repair linear accelerators for a living. I'd love to learn why proton beams are actually better, rather than just theoretically better.

Proton centers do a lot of marketing to get patients because the facility costs are so high and they need patient flow. It is definitely better for some cancers, no question. The problem is there aren't enough of those patients to pay the bills.

ragnar2020
ragnar2020 in reply to gregg57

Hi Gregg,

I’m not promoting nor plan on defending anything. I simply want to let guys know that PBT is an alternative RT, and from what I’ve learned from my own research, PBT appears to have less SEs than other forms of RT. Maybe, I’m wrong, but, I intend to use PBT for my future care. Others should do their own research. This forum is an information source for a very complicated disease and it’s possible treatments.

Jeff

gregg57
gregg57 in reply to ragnar2020

I'm just obecting to claim that you made: "PBT results in fewer long term SEs than other forms of RT."

I feel it's necessary to point that out so the readers will not be misinformed.

It's fine if you like PBT and think it's best for you.

George71
George71 in reply to gregg57

Thank you for your input gregg57,

Is it true --that proton therapy doesn't radiate in the same sense as IMRT? Can proton be repeated in the same area or is it safer to do near a previously radiated or proton treated area.

Thanks,

George

ragnar2020
ragnar2020 in reply to George71

George71,

That is a question for the PBT ROs to answer at one of the 39 PBT centers in the US. Those PBT centers compete with thousands of ROs at 4500 - 5000 radiation centers around the country for the same PCa patients seeking RT. It is a capitalistic medical jungle, and you need to do your own careful research.

Good luck.

Jeff

George71
George71 in reply to ragnar2020

Thanks Jeff

Good point.

gregg57
gregg57 in reply to George71

Protons are heavy particles that have little entrance dose and no exit dose. They deposit their energy in a very small area vs. photons. This is called the LET or Linear Energy Transfer. The intensity of photons also rises as it goes into the body and falls off after a peak, although not to zero and nowhere near as dramatically as protons.

But the photon beam has a big advantage over the proton beam that makes up for this. It can go completely around the tumor (isocentric) and the photon beam's dose can be modulated and shaped as it goes around the patient to create a fairly precise map of dose distribution. The proton beam is not isocentric and can only come at the patient from two directions. So neither has a perfect dose distribution, but they are comparable.

So the benefit of the much shorter distance of energy distribution of protons is offset by positioning and beam manipulation capability of the photon beam.

The end results are two similar treatments in terms of effectiveness and long-term side effects. There is some evidence that protons have a benefit with short-term side effects, but by 9 months they are considered to be the same.

So both are good treatments with similar side effects. The proton treatment is significantly more expensive so depending on your insurance you might have to pay more for it.

I don't know about the repeatability of treatment.

FYI, proton centers do a lot of marketing and the appeal of the treatment remains theoretical.

George71
George71 in reply to gregg57

Thanks gregg

very informative.

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