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That is one of the reasons I am always reluctant to speak to the media, they almost invariably put their own spin on it. Your analogy with Comical Ali in Baghdad is very good. Maybe the uro's have been taking a leaf out of his book all along. " There is a very good chance we can save the nerves and save your potency" "Sex can be even better after RP" "Incontinence? well, if you do your Kegal exercises you should be OK" "Impotence, well there is always Viagra" I'm going to give a prize to the best Comical Ali line used by a urologist. First prize: A copy of my favourite book.

Regards

I just read the article and, as usual, a few liberties were taken with the information. Eg they say the PCa didn't progress until I the vaccination stopped, whereas I said the PSA started to rise so the vaccine had stopped working and hence was stopped.

I suppose this underlines the fact that reporters will often put a slant on things and whilst there is some truth a newspaper story may not be all the truth.

Best wishes

PS Isn't it funny how often the words "as usual" are used in the English language, I remember these words as being made famous by Saddan Hussein's spokesman "As usual there are no tanks in Baghdad"

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Thanks

The trial just came up when I just fitted the criteria. I attended a meeting of PSA North at Manchester Christie and the man from Onyvax was the speaker. It was a phase 2 trial to check for side effects which wre minimal (so no plaebo arm on this one) and mainly down to spending money in London whilst waiting for the train home!

They hope to do phase 3 trial in late 2005!

Must nip out and buy a paper now!

Best wishes

PS anyone in the UK who wants to see a picture of me freezing in the back garden look for teh Sunday Express!

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There has been a great deal of discussion about using placebo arms in cancer trials in the research community. Most times a new treatment is compared to another standard of care not just no treatment. Placebos are not considered ethical for cancer patients so are infrequently used. If they are used in the US they go through an Institutional Review Committee and they are very focused on the well being of the patients in the trial.

They are many misunderstandings and half truths floating around into he community about clinical trials.

Since 's trial is a phase two trial there would be no placebo. Those would be used in phase three trials where they are testing for effectiveness. See explanation below

About Randomised Trials

Phase 3 trials compare one treatment with another, to find out which is better. Most phase 3 trials are randomised. This means that there are at least 2 different groups in the trial and those taking part are put into one or other group at random. This 'randomisation' is usually done by a computer. Each group in the trial will receive a different treatment. If there are 2 groups, one group will have the new treatment being tested and the other the standard treatment that they would have to treat their cancer if not in the trial. Those having the standard treatment are called the 'control group'. A randomised trial that has a control group is called a 'randomised controlled trial'.There may be more than 2 groups. Some trials test more than one new treatment or they may test variations in one particular new treatment - for example different doses of a drug. There will still be a control group, who have the standard treatment that they would have if not in the trial. Sometimes control groups are given a dummy treatment, called a placebo. This is only done if there is no alternative to the new treatment.

Why randomise?

Randomisation is done because researchers need to be sure that the results they get are correct and not biased for any reason. Of course, researchers are unlikely to be deliberately biased. But it is possible to be biased without realising it. Supposing a new treatment is being tested that has quite bad side effects. The doctors running the trial might subconsciously avoid putting sicker patients into the new treatment group. So as the trial went on, the control group would have more and more of the sickest patients in it. The less sick people in the new treatment group might do better than the control group. So, when the trial results come out, the new treatment looks as if it works better than the standard treatment. But really it doesn't. The placebo effect Patients can also be biased. Many of us feel better if we believe we have taken something to make us feel better. Even if we've only taken a tablet made of chalk or sugar. This is called the placebo effect. Phase 3 trials could compare a new treatment with no treatment at all. But then, the people getting the new treatment might feel better, even if the new treatment didn't work. They would be showing the placebo effect. The others, getting no treatment, would of course not feel any better. Some trials compare a new treatment with a dummy treatment called a placebo. The dummy treatment looks exactly like the new treatment - the same shape or colour of pill, or size of injection for example. The two groups of patients cannot be biased, because they won't know if they are getting the placebo or the new treatment. Using a placebo is not very common in cancer clinical trials. Most compare a new treatment with the treatment you would get anyway, if you were not in the trial. It would not be thought ethical to give a placebo to group of people who really needed treatment for cancer. So the research ethics committee would not be likely to give permission for a trial designed in that way.

Blind trials

A blind trial is a trial where the people taking part do not know which treatment they are getting. They could be getting the new treatment. Or they could be getting standard treatment or a placebo, depending on the design of the trial. All patients will receive identical injections or tablets so they cannot tell.

Double blind trials

A double blind trial is a trial where neither the researchers nor the patients know what they are getting. The computer gives each patient a code number. And the code numbers are then allocated to the treatment groups. Your treatment arrives with your code number on it. Neither you, nor your doctor knows whether it is the new treatment or not. The list of patients and their code numbers is kept secret until the end of the trial. In an emergency the researchers would be able to find out which trial group a patient was in, but generally no one would know until the trial had finished.

http://www.cancerhelp.org.uk/help/default.asp?page=74

If you are interested in learning more about clinical trials in the UK this link will give you additional information plus a search engine to find trials.

http://www.cancerhelp.org.uk/trials/understanding/default.asp?page=51

I find it interesting that in the US 98% of all children with cancer take part in a clinical trial but on 2% to 3% of adults with cancer do. I often wonder why that is?

Kathy

-----Original Message-----From: coolerking5@... Sent: Sunday, November 21, 2004 6:12 AMTo: prostatecancersupport Subject: Sunday Express

,Nice photograph of you in the Sunday Express alongside the prostate cancer vaccine article. Tell me, did you apply to go on the vaccine trial and was there a placebo arm involved in the trial?You certainly look the picture of health, and it brightened up my day. :-)Regards

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I just read the article and, as usual, a few liberties were taken with the information. Eg they say the PCa didn't progress until I the vaccination stopped, whereas I said the PSA started to rise so the vaccine had stopped working and hence was stopped.

I suppose this underlines the fact that reporters will often put a slant on things and whilst there is some truth a newspaper story may not be all the truth.

Best wishes

PS Isn't it funny how often the words "as usual" are used in the English language, I remember these words as being made famous by Saddan Hussein's spokesman "As usual there are no tanks in Baghdad"

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