Dr. Burzynski

cclambert

I have just been reading the book "Knockout" by Suzanne Somners. According to what she writes and what I have seen on TV, Dr. Burzynski's clinic is curing cancer without surgery or Chemo. He is replacing missing peptides in the body, which destroys cancer cells at the cellular level without destroying healthy cells.

Does anyone have any valid information on this and has anyone been to his clinic and recieved treatment.

It sounds too good to be true, but if he can do it without the side effects of chemo it would sure be wonderful.

Cathy

Betty in Vegas

I called the clinic actually
They are in Houston, and we were there for 2 months, so why not? I was not impressed. I wanted their stats, they won't give them out. They won't even tell me how many EC patients they have seen. They wanted money. The entire conversation kept comping back to money. I believe close to 10,000 basically for the first round of enzymes and tests.

I asked our doc about this and he said that they have not shown clinically that it is working to the medical community. Therefore, we didn't end up going.

Betty

38sallyb

Betty in Vegas said:

I called the clinic actually
They are in Houston, and we were there for 2 months, so why not? I was not impressed. I wanted their stats, they won't give them out. They won't even tell me how many EC patients they have seen. They wanted money. The entire conversation kept comping back to money. I believe close to 10,000 basically for the first round of enzymes and tests.

I asked our doc about this and he said that they have not shown clinically that it is working to the medical community. Therefore, we didn't end up going.

Betty

We got the info and it
We got the info and it sounds interesting, but since the insurance companies rarely pay, it is very expensive. On the other hand, if we had the money, we would probably go there. It seems odd to me that when there are people doing interesting treatments that are getting good results, that immediately they are labeled as kooks etc.
I'm pretty sure that his costs involved in providing his treatments are high. But there are high costs involved with chemo and radiation. Since insurance covers them we aren't as aware of what they are. When we compare the bills we have seen from MD Anderson, we are shocked. We couldn't afford any of this treatment if Medicare didn't pay for it. Just the cost of the diagnostic tests including PET and EUS was over $25,000. This was before any treatment. Of course, Medicare pays only a small fraction of this.
There are people who are willing and able to pay for any treatments when they are told nothing more can be done with traditional treatments. I think those are probably most of his patients. We have to remember that cancer treatment is a huge business.
I was very impressed with the research Suzanne Somers has done for her book. But then, we are interested in all avenues that might beat this disease!
Sally

Betty in Vegas

38sallyb said:

We got the info and it
We got the info and it sounds interesting, but since the insurance companies rarely pay, it is very expensive. On the other hand, if we had the money, we would probably go there. It seems odd to me that when there are people doing interesting treatments that are getting good results, that immediately they are labeled as kooks etc.
I'm pretty sure that his costs involved in providing his treatments are high. But there are high costs involved with chemo and radiation. Since insurance covers them we aren't as aware of what they are. When we compare the bills we have seen from MD Anderson, we are shocked. We couldn't afford any of this treatment if Medicare didn't pay for it. Just the cost of the diagnostic tests including PET and EUS was over $25,000. This was before any treatment. Of course, Medicare pays only a small fraction of this.
There are people who are willing and able to pay for any treatments when they are told nothing more can be done with traditional treatments. I think those are probably most of his patients. We have to remember that cancer treatment is a huge business.
I was very impressed with the research Suzanne Somers has done for her book. But then, we are interested in all avenues that might beat this disease!
Sally

I agree that if they get results who cares...
But if they get results--then they should let you know what those are when you call. I'm always skeptical when doctors will not tell you their stats. If they don't want to share them, they probably aren't good. There is a lot of hype about this doctor, but before I plop down tens of thousands, I want to see some research and proof. I didn't mind putting our house up for proton, because there were studies that showed excellent cure rates. But I'm not going to throw money after things that don't have any track record.

If this doctor was getting results, I think insurance companies would pay for his services. I also think that he'd show me results when I ask for them.

It isn't that our docs don't like alternative means. Our doc was very impressed with the book anti cancer by Servan-Schreiber. A lot of the things in there are considered alternative.

Again, I'd go take out a loan if they'd show me some results that showed their methods actually work. They don't have to prove to me that they will cure Layne, just that their track record shows that what they are doing has medical benefit.

cclambert

Betty in Vegas said:

I agree that if they get results who cares...
But if they get results--then they should let you know what those are when you call. I'm always skeptical when doctors will not tell you their stats. If they don't want to share them, they probably aren't good. There is a lot of hype about this doctor, but before I plop down tens of thousands, I want to see some research and proof. I didn't mind putting our house up for proton, because there were studies that showed excellent cure rates. But I'm not going to throw money after things that don't have any track record.

If this doctor was getting results, I think insurance companies would pay for his services. I also think that he'd show me results when I ask for them.

It isn't that our docs don't like alternative means. Our doc was very impressed with the book anti cancer by Servan-Schreiber. A lot of the things in there are considered alternative.

Again, I'd go take out a loan if they'd show me some results that showed their methods actually work. They don't have to prove to me that they will cure Layne, just that their track record shows that what they are doing has medical benefit.

Burzynski
Betty, I talked to the people at the Burzynski clinic, and was told that my insurance would pay for the treatment. But, it would be out of network, so I will have to pay the difference. I have an appointment on Feb. 16 to see what they have to say. I have appointments at MD Anderson on the 17th and 18th, so I will make a decision after I get all the results in. I have a CT scan on the 17th.

I just really don't want to go through the horror stories I am hearing about chemo. But, I will do what I have to do. I am not even sure that I will need chemo, but since one lymph node had suspicous looking cells, I think that is the route they are going to want me to go.

How is Layne doing with the chemo now. I hope he has found a way to tolerate the side effects.

Betty in Vegas

cclambert said:

Burzynski
Betty, I talked to the people at the Burzynski clinic, and was told that my insurance would pay for the treatment. But, it would be out of network, so I will have to pay the difference. I have an appointment on Feb. 16 to see what they have to say. I have appointments at MD Anderson on the 17th and 18th, so I will make a decision after I get all the results in. I have a CT scan on the 17th.

I just really don't want to go through the horror stories I am hearing about chemo. But, I will do what I have to do. I am not even sure that I will need chemo, but since one lymph node had suspicous looking cells, I think that is the route they are going to want me to go.

How is Layne doing with the chemo now. I hope he has found a way to tolerate the side effects.

Do let us know what you find out at the clinic
Well, he is doing much better. And I have to say that the original chemo he was on was NOT a horror story. He tolerated it very well. And actually, right now he is working 8-10 hours a day on it, so he is not flat on his back or anything. It was just an adjustment to the epirubicin that took him down the first week. He's supposed to start EMEND tomorrow so that might help immensely, as well.

Let us know what you find out at the clinic and what your doc at MD says...keep us updated. I am always interested in learning more. I just didn't get any answers from them...I wanted their cure rates and they just insisted they don't give those out. Well then, what proof do I have I am spending our time and money on something that has any provable merits? That was my question.

There are a lot of places out there who claim to do things--but you have to have studies to back that up and cure rates to back it up. So let us know what they end up giving you.

Jim Pilot

Betty in Vegas said:

Do let us know what you find out at the clinic
Well, he is doing much better. And I have to say that the original chemo he was on was NOT a horror story. He tolerated it very well. And actually, right now he is working 8-10 hours a day on it, so he is not flat on his back or anything. It was just an adjustment to the epirubicin that took him down the first week. He's supposed to start EMEND tomorrow so that might help immensely, as well.

Let us know what you find out at the clinic and what your doc at MD says...keep us updated. I am always interested in learning more. I just didn't get any answers from them...I wanted their cure rates and they just insisted they don't give those out. Well then, what proof do I have I am spending our time and money on something that has any provable merits? That was my question.

There are a lot of places out there who claim to do things--but you have to have studies to back that up and cure rates to back it up. So let us know what they end up giving you.

emend
Hi betty I am in my 3rd week of chemo in NY and started with Emend from the beginning. It has been very easy so far ,no side effects just a little problems sleeping the first night but I think thats from 2 days of steroids with my chemo treatments.
Thanks for your encouraging posts jim

38sallyb

Betty in Vegas said:

Do let us know what you find out at the clinic
Well, he is doing much better. And I have to say that the original chemo he was on was NOT a horror story. He tolerated it very well. And actually, right now he is working 8-10 hours a day on it, so he is not flat on his back or anything. It was just an adjustment to the epirubicin that took him down the first week. He's supposed to start EMEND tomorrow so that might help immensely, as well.

Let us know what you find out at the clinic and what your doc at MD says...keep us updated. I am always interested in learning more. I just didn't get any answers from them...I wanted their cure rates and they just insisted they don't give those out. Well then, what proof do I have I am spending our time and money on something that has any provable merits? That was my question.

There are a lot of places out there who claim to do things--but you have to have studies to back that up and cure rates to back it up. So let us know what they end up giving you.

Hi Betty and Layne,
Glad to
Hi Betty and Layne,
Glad to hear Layne is doing better. Jim had problems sleeping and has had good results with the new kind of Melatonin. He tried it several years ago and it didn't do anything for him, but he got one at Whole Foods (Finest Pharmaceuticals) and
it has really helped. Even when he is on the pump, he can go right back to sleep.
Did they tell you why they switched chemo for Layne? Jim is on the same (Oaxaliplatin and 5FU) through Proton that he had originally. Are you having it at MDA or in Vegas?
They have scheduled Jim for an extra week of chemo after Proton ends. Did Layne have that too? We need to know how long we should plan on being at the RV park. They get busy in March. Hope all is going well.
Sally & Jim