The first 4 months part 1

16 years 9 months ago #6287 by Patricia
Replied by Patricia on topic The first 4 months part 1
Well you may be sincere Rosie...but if as you say the top Cancer Hospitals in the US are not using the correct protocal or are to slow to adapt ...sure doesn't say a whole lot about us doing anything right does it....but we as patients have to put our trust somewhere...and we can educate ourselves out the wazoo but there are a zillion papers out there written and we can choose to believe whichever one suits our need can't we? There has to be a balance on this forum and we can't prescribe nor tell anyone how to proceed....we can guide...we can lend our own experiences...but we can't say there is only one way to proceed....not even the top experts agree on that and we're far from experts. What i wrote was a direct quote from Memorial Sloan Kettering Hospital in NYC....it wasn't fiction. You chose to disregard it and dismiss it.......i think anyone who's thinking about treatment should read what the #1 bladder cancer hospital is doing. Can't just have one side of the story here.
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16 years 9 months ago #6278 by Zachary
Replied by Zachary on topic The first 4 months part 1

You previously made a claim about the superiority of European treatments that I asked you to back up and you never replied. Extraordinary claims like that require extraordinary proof, and you provided none. You just made the statement and left it at that.

I wasn't coming to Patricia's defense at all. I was hoping that you would provide more information on a claim that you made. No one is ganging up on you. We're all in a similar situation.

In fact, I think Patricia is wrong about something she just wrote about Vitamin K. She said it is a blood thinner. As far as I know, it isn't a blood thinner at all--it works against blood thinners. It shows how cautious we should be about dispensing medical advice.

I could be wrong, of course. :)

Rosie, when I look at all the work you do here, and how much you try to help and comfort others, I'm impressed and grateful. But asking for information backing up a medical claim shouldn't raise your hackles.

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
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16 years 9 months ago #6277 by Rosie
Replied by Rosie on topic The first 4 months part 1
Zack, my "valid" and sincere opinions are formed after doing extensive research. Most of the time I give a link to the research and tests that helped me to form my opinions. I can't really do that with the information I received from those in "slow protocol change institutions" as the statements were not in writing but rather verbalized to me as an aside. How nice of you to come to Patricia's defense. ;D
Rosie Ambs
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16 years 9 months ago #6276 by Zachary
Replied by Zachary on topic The first 4 months part 1

Hello Rosie,

I certainly don't want to enter a sword fight with anyone here. I've been cut open too many times already in the past year.

However, sincerity does not always equal validity. One can be sincere in one's beliefs and still be very wrong. My friend's wife sells a Noni product. She wanted to give me some, since she sincerely believes that it can cure all diseases, including cancer.

"Suffice to say" is no answer at all. It's just repeating a statement.

What Patricia asked you was a legitimate question. Whether or however you choose to answer it is, of course, up to you, and regardless, I wish you well.

Zach

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
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16 years 9 months ago #6274 by Rosie
Replied by Rosie on topic The first 4 months part 1
Patricia, I don't want to enter a sword fight with you. Suffice to say my seven years of invovlment with a number of urologists, research, organizations nationwide and world wide has taught me what I stated about protocol changes.

As far as Mitomycin - In 2006 and 2007 both the U.S. and Europeans are stating Mitomycin with the correct dosage and preparation significantly stops recurrence. I don't really understand your seeming sarcastic attitude toward me contained in your post. I am being sincere in my posts in my beliefs and hoping to help others in my similiar type and grade.
Rosie Ambs
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16 years 9 months ago #6268 by Rosemary
Replied by Rosemary on topic The first 4 months part 1
Yosarian,

I had my first 6 BCG's starting last May of 2006. Scared to death. I didn't take Oncovite, but I went to the local Health Food Store and bought a comparable Multi vitamin supplement with good anti-oxidant qualities. I almost broke the bank buying the genuine Essiac tea, and I also took an Aged Garlic Supplement. Doctor Lamm had a clinical trial in the works for garlic, but, it never happened. Maybe he couldn't get funding.

After 6 BCG's, I had another biopsy and it was very clean. 3 months after the 6th BCG I had 3 more, then cystoscopy, and 3 months later 3 more BCG's. I go for my cystoscopy on July 11th. So far so good.

I no longer am taking the supplements, except for garlic, and I make my own Essiac tea. I'm not recommending it, because I don't know whether it's doing any good. I simply take it because I want to take it.

It all becomes so very expensive over time. If you can afford it, go for it. I don't think it will hurt.

I eat a lot of brocolli, drink green tea when I can get to it, and drink as much filtered water as my body will hold. I take the garlic. I put my Essiac in a little fresh water every morning before I drink or eat anything else. If nothing else, it cleans me out.. :P

The only thing that I am not doing, that I would like to do, is to get more exercise. Dr. Lamm recommends it, but, it is so hot in North Carolina and I'm still a little funked out from BCG #12 last month. Not to worry. Everything will be alright.

Take care. I'm glad you are here.

Your new BC friend,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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