No more pro Dr Burzynski postings please

[jboyhk]

The guy is a quack. Just stealing money from the desperate. This site is invaluable in exposing all the quacks and scams in cancer cures.

If you want to read all the details for yourself here they are.

http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/burzynski1.html

http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html



"Burzynski has never demonstrated that A-2.1 (PA) or "soluble A-10" (PA and PAG) are effective against cancer or that tumor cells from patients treated with these antineoplastons have been "normalized." Tests of antineoplastons at the National Cancer Institute have never been positive. The drug company Sigma-Tau Pharmaceuticals could not duplicate Burzynski's claims for AS-2.1 and A-10. The Japanese National Cancer Institute has reported that antineoplastons did not work in their studies. No Burzynski coauthors have endorsed his use of antineoplastons in cancer patients"

[jboyhk]

More stuff on the guy

http://ratbags.com/rsoles/comment/burzynski.htm

Another peculiar aspect of the Burzynski trials is that people have to pay to be experimental subjects and the amounts of money are not insignificant. I recently heard of a young boy whose parents who were trying to raise $14,000 just to get him into the program and were expected to find $4,000 a month to keep him there and I know of another case where parents were trying to raise $125,000 so that their young daughter with a brain tumour could receive "experimental treatment". (See Note 1 below.) Normally, clinical trials are paid for by the person or organisation producing whatever it is to be tested.

It seems that Dr Burzynski cannot legally offer antineoplastons as a cure (or even a treatment) for cancer, but he can offer them to people as part of clinical trials. After the number of trials that have been conducted, and the number of years that the research has been going on, and the number of dollars that must have been collected over the time, it is surprising that the medical literature is not full of success stories and the intensive care wards empty of cancer patients. Unless antineoplastons don't cure cancer and the continuation of patient-funded clinical trials is just a scam.

[pigeonca]

Thank you for the references to ratbags and quackwatch.  Those sites rock!  You hear so much baloney on the internet, all mixed up with truly useful and important information, and quackwatch and ratbags are a great source for learning what's what.

[couldn't think of a nickname]

Sorry, the other thread was closed.

Niceguy, ribavirin is not a direct antiviral, as far as HCV is concerned. It does not target the virus. It is a nucleoside analog. IFN is said to have antiviral properties, but it isn't necessarily acting on the virus, it boosts the immune system.

As far as the rash, there was a lot of speculation that it was caused by a 950/ribavirin interaction.
Rashes are a known issue on SOC, so I don't see how one could say that 950 and ribavirin might be the cause.
If rashes didn't occur on SOC, then yes, it would be fair to implicate 950.
Bottom line is, they removed the RIBA when patients had these problems, not 950. Let's be careful here.
http://janis7hepc.com/side_effects.htm
20% report skin problems on SOC.

[NYgirl]

Thanks - I read all of that yesterday afternoon after I posted that I "thought" he was probably an author or some other scam artist...figured I should check it out.

Turns out ANYBODY claiming to have a miracle cure usually is since one doesn't exist.  That is the easiest way to tell.

[FlGuy]

So it sounds like, due to the kindnes of friends and relatives, things are working out.  Do you have a different ifn this week? Was riba an issue too or just the peg?

[Myown]

if you know how to read English, I never claimed, nor did Dr. B claim that he has a "cure." His tx. has helped and put many into remission. And I also said he claims it is not for every type of cancer.If he was a fraud, all of his patients on his website, would have testimonies that they are cured and that is not the case. Wack watch site was pointed out to me by a liver doctor because I also go to holistic doctors along with my conventional.Never checked the site out, but I would assume they  have an agenda that is against ANYTHING that goes against big drugs. hmm wonder why?

I may have missed something you wrote because at this point posts such as yours, I read the first few lines and move on, not worth my time.

Is this the initiation to be part of the gang bangers on this forum. Don't forget you have to bow and kiss that guys ring every time he posts.

have a good day

[NYgirl]

My mother went and picked up all of my meds.  You have to realize they are retired and don't really have money - but she simply would NOT, not do it. So now I'll be paying her back (since I didn't have $2000 cash on hand).

So that is one month.

Then...Mrs. O sent me two doses of the mix it up type peg...and about 100000 Ribas I swear! I couldn't BELIEVE how many she sent!

So that is six weeks meds.

According to C2C they put a script in the mail with the paperwork for the doc to fill out and even before I am approved they will just send me a months meds in the mail!

So altogether right now I've received (after gettint those meds from C2C) almost three months meds!

:)  Who knows...I might really just want to stop at that point anyway, it's getting pretty tired doing this stuff for so LONG. But of course I just whine and you know I'll keep doing it as long as I can. I truly believe it is the best shot at beating it and keeping it dead!

Where do you stand right now in decision making?  Or are you just going to give the body a rest for a little while...then get going right away?

Dr. J was so on the money with his thoughts on 2s and 3s.  I wish the OTHER Doctors in the medical community would catch up...lucky my AZZ.

[NYgirl]

I think (personally) people just worry that people who aren't treating yet use ANY excuse they can find to put off treatment and are willing to buy into anything they can.  I mean it's so much eaiser to take pill "FixLiver" than to do treatment so they WANT to believe that other things might work === and that is what the concern is.

When I had just found out I had it I was pretty sure I could detox my body with antioxidants and a lot of water and vitamins etc.  I have like 100s of dollars worth of home in my closet of course! I was going to just wash it out of my "liver" LOL.

How stupid I was but I really think it's a part of the first stage of denial or something.

I think he just posted that stuff up so that people DO realize that we have to be VERY VERY careful about what we listen to...or we're up the creek.

:)

[FlGuy]

That's great. But, if it was your daughter - you'd do the same. So, what you have and the month CTC is getting to you, that should be in the neighborhood of 66 weeks or so.  And if you und at about 24, that 's 32 weeks of und. You've been through a lot Deb, the end is near. A few more cases of fudgicles and you'll be home. God bless Val.

[Kalio1]

Testimonials, where people claim they were "cured" by someone or that they saw space aliens or whatever are not reliable at all as evidence that anything they are saying is true. Someone saying it his treatments work is worthless and should not count as fact. To begin with, most testimonials are from people who were PAID in some way, even though they do not tell you that, that is the reality. They could be paid with money or treatment potions or whatever but paid just the same. The "doctor" ( and I use tht term loosely) is a quack. He preys on sick, desperate people. He is the worst kind of liar, the type that offers hope so he can profit off of people who will try anything to survive. Plase, check quackwatch before you defend this type of scumbag.

[FlGuy]

Pardon my math.  66 weeks, und at about 24 means about 42 of und. Even better.

[Kalio1]

You could be right, but with several people on VX here saying they have an "all over" rash that requires steroids to control it is so bad I can't help but think it could be related to VX. Yes, people on SOC get "rashes" but not rashes like that! I have heard of very few if any people getting an all over rash so bad they have to use steroids from SOC. We have to wait til the evidence is in but it is troubling. Maybe it's a group that is on a higher dose of VX or some other issue, like VX interacting with Riba, who knows. We have all heard there were NO side effects from VX or very little or ones that were insignificant. Time will tell. I hope you are right and they attribute it to some other reason but they both describe a rash that sounds like the same rash in both of them and mremeet knows yet another person on VX that has it too. When the first group data comes out in a few months we should have some answers.

[Myown]

Dr. B's tx has nothing to do with tx for HEP C. I think you seem to think I am saying to go to him for Hep? No, I'm not. Nor am i telling anyone to go to him for cancer tx. This came up in the post and to tell you the truth, I don't remember how I got on the subject, nor do I feel like wasting my energy to look at the post again.

It all goes back to attitude and how people disagree. There is nothing wrong with disagreements, but the way some people react is "ooooooh got ya now" as if there are certain people who lay in the weeds stalking victims of prey.

Who the heck does this person think he/she is opening a thread telling me what I can or can not post?

Dr.B's work will take ions for mainstream med to recognize as does any tx that goes against the big guys. As far as I know, but its been a while since I read about DR.B...if you go directly to him for tx, you have to pay out of pocket, but if you fail conventional tx, insurance covers.

so as far as cancer tx being so high.....what would it cost us to pay Roche or whoever out of pocket for OUR tx?

hey if this thread helpe this guys "self esteem," because of co today that is all we are to focus on, then I'm glad I was able to help him FEEL GOOD.

see ya later.

[Myown]

Dr. Calrton Fredicks, Dr L. Pauling, the list could go on and on. They were all labeled quacks for many years.

Well Dr. Pauling proved them all wrong and is highly esteemed as the world now knows.

Dr. Carlton Fredricks was pioneer in nutrtion, he's the doctor who said the red dye# 2 was causing cancer. Every called him a quack, but slowly years later his work is being accepted by mainstream doctors,,,because it was proven.

Dr.B's work will take years to become accepted. But as I said, and as he said, it is not a cure yet, but there are people that have been put into remission and are still in remission. Barbara Walters crew had evidence staring them in the face.

[couldn't think of a nickname]

There is only 1 dose of 950 in the trials. 750 mg, TID.
Therefore, it cannot be due to a higher dose group.
And, I think we have all seen people on SOC have severe rash problems. Further, with the study still blinded, no one really knows if they are taking 950 or not. This is why this is nothing more than speculation, and one should not jump the gun and say it is troubling about the drug. Before that can be said, we should really see the data from the clinicians.

Lets also keep in mind that these occurrences IIRC happened early on in the trial. The other trial was only 12 patients, but did treat past the time these rashes were reported, and those 12 were on triple combo also.

[jmjm530]

It's interesting that those who caution against rushing to judgement about the the efficacy of VX-950 are the same people rushing to judgment about the side effects :)

I think there's a reason "riba rash" is called riba rash and to the best of my knowledge it has nothing to do with VX-950. Over at Janis, someone was just recently pulled off treatment because of a similar rash. I've also read of people being pulled off treatment a number of times before because of the rash. None of these people were in the Vertex trials. Could it be that the rash in question is caused by VX-950? Of course, by speculating on the unlikely makes no sense. Soon, no doubt, you will start reading here and elsewhere on the net that VX-950 causes a horrible rash. That's how things seem to go around here. Hope this finds you well.


-- Jim

[NYgirl]

Kalio said:  He is the worst kind of liar, the type that offers hope so he can profit off of people who will try anything to survive



Myown - the longer you are around here and on treatment the MORE you will see of these devils in sheeps clothing.  You will get to spot them a mile away and know all of the reasons why.

We just want you and others to be careful.  Believe me, we were all just as naive at one point or another.

Unfortunately, unlike the people in here - not everyone is kind and there are a LOT of snakes out there looking to bite a piece of the American Pie. It sucks.

[couldn't think of a nickname]

very well-put, and all very true.

[lab-rat]

I'm also in the vx study and have had few symptoms at all besides that "brain damaged" feeling we all seem to get from tx.  I did have a minor rash in the very beginning that appears to be related to the sunscreen I was using - it was isolated, only lasted a few days and it never itched.  Two other subjects at my study site have mentioned "skin sensitivity" as one of their symptoms but that's all I know.

I just thought I should mention that to Jim's point, there are others, particularly on the financial message boards that are watching us.  They've even mentioned mremeet by nickname as someone to follow. - FYI

[Kalio1]

I didn't make any "rush to judgement" at all, where did you get that from? Not from anything I said that's for sure. I said we need to wait on data. I have always said we need to wait on data and not go telling people it will be available "in two years" as was said here recently or telling people it has no side effects which are yet to be determined. The fact that we have several participants in the trial on this board who have this all over rash going on is troubling in my view. It could turn out it is not related to VX but then again it could turn out that it is. AGAIN, we need to wait on data to know for sure.

[Kalio1]

I'd also like to add that I have cirrhosis, I am on the second round of treatment and I, as much as anyone hope that VX950 turns out to be an "answer" to my disease issues. We all want an answer, but what I see is people making health decisions to "wait on new drugs in the pipeline" and there is no definate, confirmed data yet to back up the claims being made.Tht is what trials are for. Trials are still going on. They are making decisions based on unverified info. and that can be a dangerous thing.

[couldn't think of a nickname]

Trials ARE verified information. Like it or not, it is the standard ALL use. Saying 950 might have caused a rash, when it is a well-known SOC issue, is SPECULATION.
The problem is, you might say "let's wait for SVR data before we get excited", yet you might also say "a few people have a rash, this could be troubling for 950".
I hate to say this, but I don't think you know a whole lot about 950, as evidenced by the possibility you raised that they might be in a higher 950 dose group. This is the 3rd trial in a row where they have used the same exact dose, and have stated that is their continued path.

[Myown]

http://www.ouralexander.org/burzynski.htm



Just incase someone ever has a child or grandchild that God forbid gets cancer, I wouldn't have felt good about myself, just letting you all base your info on wack web or whatever it is  called.

His findings (Dr.B) are nothing less than amazing IF anyone is a reader and not just following the "group think."

And again, no where will you find him saying cure,,,,but what you will see is an oncologist who "researched" Dr. B work and the conclusion this oncologist came to,(one of the many things you'll see.) I find his work of interest now because of the chemo decision I have made, due to it's my only choice as far as I can see....but I don't close my mind and not believe that some day people will have non toxic options that work. His research and work seems to point in the direction that some day chemo may no longer be of value. Don't you think that scares alot of big drug people and doctors?


It also explains the RED TAPE,FDA, POLITICS AND CONFLICT OF INTEREST,
If someone really takes the time to read, they may have a different outlook.

okay, I close the book on this one.....

[NYgirl]

Well we tried to make some points girl but aren't able I'm supposing. ;)

I want to just say here = that I've ALWAYS read Kalio say exactly what she has said above and in my opinion...that is the only truthful valid statement that CAN be made at this time.

Waiting on drugs that according to the FDA don't even EXIST as protocol is a HUGE gamble. We do not know if they will EVER be approved as treatment. Trials are just that - trials. Thank God people do them - but most who think of waiting don't do it for the "better" odds, they decide to wait thinking it will be much EASIER.  At least that is what I've read over and over.

Having a fear of treatment itself - when there currently is an approved and viable protocol is a sad thing but it happens.



And if those IN THE TRIAL are developing what I assume is a new type rash that is that bad...who knows what might come later.

[couldn't think of a nickname]

First of all, 950 is a drug that exists. It isn't approved yet, but it is a drug. Trials give data, which are facts.
Second of all, I think this is being spun. Now its about people waiting for unapproved therapies. No it isn't. Let's get back to the point. Rashes occur on SOC. Now some in the VRTX trial get them, so there is now guilt by association.
And, saying it is a "new type of rash" is also speculation.

And, no one here is telling people they should wait for 950. Opinions are sought and given, but this is not the issue.

[Kalio1]

That's right, that is what I said, trials ARE verified info and they are not done yet! We don't even have complete data from the first group yet and won't for months to come. I have read all available info on the subject just as you have and I still say the same thing, we need to wait on the final data. We DON"T have SVR data yet either, thanks for mentioning it. The rash either could be related to VX950 or it couldn't, I don't know yet, you don't know yet, no one knows yet. What we do know is some people on the VX950 trials are having an all over body rash problem and that is ALL we know so far. Your assumption that this rash they are talking about isn't related is just that, an assumption. The mere fact that it exists in people treating in the new trials with VX950 is troubling to me and I am sure troubling to those with the rash and alo to the doctors running the trial. Mremeet said if he can't find a solution soon he would quit the trial in another thread, that tells me that is a really, really bad rash. The other participant has had to cut her Riba out and is afraid of what that will mean for her later on.  We need to wait on the data to see how many had this issue and see if they can determine what caused it.  Saying you don't think I know very much about it is not very nice, I am sure plenty of people don't know the exact dosages being given off the top of their head. My point was maybe there was an unknown factor contributing to the rash. Attacking me personally does not bolster your argument,attack the argument not the person.

[couldn't think of a nickname]

I am puzzled, what data are you waiting for from the earlier trials? All of the important stuff is out, this has been stated many times. I am afraid if nothing else comes out, they'll be bashed for that.

Otherwise, this is going in circles. We have done this dance before.
The data out counts, no matter how much some might want to discount it. There will be more. No one has ever disputed ANYTHING about that, or about SVR data, and no one has made claims. To you, the rash is troubling for 950. To me, it is troubling only that the patient has it because as my earlier link showed, it does happen on SOC. And, if the clinician thought it was from 950, they would have lowered 950 or discontinued, but they lowered the riba. Did anyone ask if the rash subsided after lowering riba? If they did, I missed it.
I do realize that some will never totally be comfortable with 950 no matter what the data, or with SOC for that matter.

[NYgirl]

And, saying it is a "new type of rash" is also speculation.

These drugs do NOT technically exist in the world yet. They are not approved and they are trial drugs = and called that for a real. They might NEVER EVER be approved by the FDA and therefore they wont "exist" is all that I was saying.

Does Vertex have a side effect of sterility? Blindness in ten years due to cornea issues? Kidney disease? Who knows but that is why they are TRIAL drugs. Do they even lead to long term SVR?  Nobody knows.

But this rash sounds "like" the most severe form of ribarash possible - and since it's not ONE person with this severe form...which is so horrific it causes people to consider QUITTING...it makes you speculate that is because of the Vertex.  Of course it could be from mold dust spores in the midget microcosm of the night time blooming quandrafyl plant...but it seems more likely it's from the Vertex.

But - other than that many people say "I'll wait on the new drugs" all of the time and they DO need to realize there might actually never BE new drugs in our lifetimes.

Yeah we all hope like hell that there will be...every single one of us does - but we don't know that there will.

[Kalio1]

"Of course it could be from mold dust spores in the midget microcosm of the night time blooming quandrafyl plant"


LOL that cracked me up

[jmjm530]

Kalio: didn't make any "rush to judgement" at all, where did you get that from?
--------------
From what you and some others have posted.

The "rush to judgment" I'm talking about is the strong inference that Vertex causes some sort of rash when indeed no proof exists. Specifically, sentences like, "You could be right, but with several people on VX here saying they have an "all over" rash that requires steroids to control it is so bad I can't help but think it could be related to VX. Yes, people on SOC get "rashes" but not rashes like that!"

Feel free to speculate of course, I'm just pointing out it's amusing that those that have criticized most the lack of finalized Vertex trial dats are the same ones now drawing inferences from NO trial data.

Anyway, to paraphrase you, I'm done here :) People can re-read the thread and make up their own minds.

-- Jim

[cuteus]

If there was one person, on tx, that people afraid of tx should listen to, is definetely you! Someone who experienced severe anemia early on tx, thyroid dysfunction along with some of the run of the mill sx, and is still telling people that tx is doable and not the end of the world.  ODD that you are not getting through with the message, though. I don't think the 'afraid to treat' group is ever going to listen, if they haven't yet. Don't stop trying, though.
When all is said and done, and you get your SVR, consider volunteering for the AASLD events, they can always use motivational speakers.  There was one such event in my area on the 29th, but i was not able to participate.
stay well

[NYgirl]

Thank you. Very much.  I will try to keep it all in mind when I start to get discouraged by some comments.

Face it, we both know how easy it would be to use any excuse not to or to stop or whatever....but it putting your head in the sand doesn't make the problem go away.

I already did that and look at the damage I did to myself. I'm TRYING to be a grown up now...and it ain't easy.

But maybe one person will listen and it will save them from going from stage 1 to stage 3 cause they're just too scared. Nobody wants to treat for as long as we have do they!

Between you, me and Kal I'd say we equal an entire lifetime of treatment!   ;)

[amirtracy]

deb,
Your positive attitude and reading your posts were part of the reason I felt I could do this thing. You're inspiring and uplifting. Thank you.   Tracy Week 33/48

[Kalio1]

I said it could be cause by several factors, one of which is VX950. I thought that was obvious, it's either SOC or VX950 or some unknown factor causing it.
I have repeated my position ad nauseum: we need to wait until the trials are over before making health decisions based on VX950 or any drug still in trials. It isn't that I am "down" on VX950, I am "cautiously optimistic." My current heros are all those in the trials who are blazing that trail for us all. There is a lot of good evidence around showing great promise in it working. I am not the gambling sort. It is bad enough taking these drugs, approved drugs mind you. It would be great to shorten the tx length of tx, yet we don't have SVR data, the people on it have to complete their SOC first. I want to see that data! All I care about is SVR and if it will be easier and shorter, perfect. I did not say this rash the participants speak of was caused by VX, I said it COULD be and it COULD be. I don't get why you guys don't think VX is one of the factors that could be causing this rash problem for them or why you are defensive about it, don't we want to know all effects, good and bad? I hope it isn't caused by VX, but it did happen so it will be part of the data, maybe we will never know why. Maybe they will be the only two that have it, we don't know yet. Maybe Maybe Maybe, that is the problem! Maybe everyone will acheive SVR but grow a blue tail in 5 years, who knows. (I'm kidding!)

This drug hasn't made it through trials yet, promising as it looks. Talk about a lack of data/info on what VX950 will do or not do to people over time. There is none. This is new territory.

[jmjm530]

On an unrelated matter, I posted to you in yesterday's "Milk Thistle" thread started by NiceGuy.

[jboyhk]

Yes it is clear you are not reading the links or else you would not have posted that website. (also when did Barbara Walters interview Dr. B? I hope you are not confusing that with his Sara Jesse Raphael interview which was a farce (3 out of the 4 people on that show went on to die afterwards. The only survivor had a cancer that has a good prognosis according to conventional science).


Read up on www.ouralexander.org on http://www.ratbags.com/rsoles/comment/burzynski.htm

"This is an advertising site for Dr Burzynski. I was surprised to find that someone would use his own dead son in an advertising campaign until I found out that Michael Horwin was doing the PR for murderer Alan Yurko (he withdrew when the money ran out).

The last time I looked at the site it said that the Horwins were on Burzynski's doorstep six weeks after Alexander had been diagnosed. There was no possibility that he could have undergone all the claimed treatments in that time. Put another way, Michael Horwin was lying. Remember, this site was probably paid for by Burzynski, and you should not always believe what you read in advertisements.
The father put the site together because doing publicity and advertising was what he did for a living.
Other than an up to 80% chance for a complete cure. Burzynski claims to have treated more than 8,000 patients, but his supporters have told me that he does not claim to have cured any of them."

[jboyhk]

Are you just not reading those links I posted?

1) Isn't it ironic that both L Pauling and his wife died of cancer?

http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/c.html

2) After 21 years why hasn't Dr B allowed one proper clinical trial to be done? As one critic says, it only costs a couple thousand dollars to hire an independant firm to do the protocol (for example in Dr B's current 'clinical trial' which he designed the protocol he defines those who withdraw treatment as a 'success'!)

[Kalio1]

Glad to see you are still hanging in there. Is the Procrit working? Hope you are doing ok. You are getting there! The light is shining through the tunnel.

[amirtracy]

Thank you for noticing my light and my tunnel! and yes the procrit is beginning to turn things around for me. i don't feel like youknowwhat all the time! again, thanks for everything and your input here.

[Kalio1]

My husband says I will SVR and that is that. LOL I think he is as sick of this as I am. We just went for a walk downtown on this lovely fall night in our beautiful town and had to come home because I got sick to my stomach. Sigh. My patience is wearing thin.

If I don't clear we will take a trip back east and visit them both. We figure if we go that far might as well see them both and visit some relatives and sites and make a trip of it. If we are there, it will mean I am not on tx so hopefully can have a good time and feel decent. Then I will resume doing something about it when I get home. Maybe take a break from all meds for a few months just to catch my breath. Even if I clear I will do maintenance if I can get the meds. I want to discuss that with Dr. J and Dr. A too. My doctor is pushing for maint.
I'd definately like to get a Fibroscan. Really I want an Elastogram but they aren't available yet.

[jmjm530]

"Both" is an EXCELLENT idea and I wouldn't even fathom a thought about maintenance (never mind a drop of peg) until you speak to them both.

In other words do seem them whether you clear or not since it sounds you will be wanting answers (liver stage and the mainteance issue) regardless if you clear. You will want to make appointments a number of months in advance as both have busy schedules. In fact, can't hurt to call now and get yourself in their books.

My gut feeling is that you will clear, but can't think of two better doctors to consult with either in any case. BTW Fibroscan is much more mature and studied than Elastogram. Afdhal himself has probably over a 1000 scans in the data base by now, not to mention the other Fibroscan centers and history in Europe. I like your husband's attitude.

-- Jim