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Best wishes to all for a great Holiday Season, and may we all get "Low PSAs" in our stockings.

I'll drink to that! And thought some of you might like to hear that my father's PSA count has fallen, after two cycles of docetaxel, from 840 to 460. He is very pleased

Sue

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Everyone,

When I look at any paper I always ask a series of questions.

1. when were the studies done? Are they studies or clinical trials? What is

the level of certainty?

2. Are they concept/theoretical studies or are they done on real people?

3. What is the purpose of the study? Is it done by someone who will make

money from the study or is it done by an independent group that is looking

at the protocol for more pure knowledge? This is especially important when

you are looking at treatment alternatives. Eg is pomegranate juice studies

that are done by the pomegranate board vs. studies done by an independent

source.

4. Which patients based on the trial results are appropriate or

inappropriate for the treatment?

When I look at this paper I can't do any of that because sources are not

credited. There is just not enough information. It is interesting to read

and something to think about but it is not a conversation stopper. Looks

like it may have been part of a package that U of PA produced to get

approval to build their facility but I do not know.

There are two sides to the debate and each side has valid points to make.

People making decisions need to read both sides so they are reaching a

balanced and reasonable decision with as much information as they can get.

I am not trying to sell or convince anyone to take an action in either

direction.

Patients need to be aware that evidence based medicine is important and

gaining additional support in the cancer community. Unfortunately in

prostate cancer, there are many areas that lack adequate evidence at the

current time. In an era with decreasing funds for research and treatments we

need to be asking, demanding that we get the research that you need to make

adequate decisions based on good strong clinical principles. Until we get

that men will just be participating in something like a clinical trial

without gathering of information.

All that said because we do not have the proof that doesn't mean that

something is untrue. It means that we just do not have the information

necessary to say that it is. There have been many instances where what we

thought was true many not be after a trial is done. The SELECT trial is an

example. Co morbidities may not be identified without the information from

clinical trials. An example of this is the potential relationship between

diabetes and heart issues and hormone therapies.

Kathy

________________________________

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Fuller

Sent: Saturday, December 13, 2008 8:46 AM

To: ProstateCancerSupport

Subject: Proton Information

Please do not consider this to be a continuation of the discussion between

Dr. Chodak and me.

Here is a link to information on proton therapy that may be useful to anyone

newly diagnosed with prostate cancer and in search of a treatment. The

author is a respected member of the medical community, and a board certified

radiation oncologist.

http://protoninfo.com/Articles/UniversityofPennsylvania.pdf

<http://protoninfo.com/Articles/UniversityofPennsylvania.pdf>

Best wishes to all for a great Holiday Season, and may we all get " Low PSAs "

in our stockings.

Until next year!

Fuller

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Everyone,

When I look at any paper I always ask a series of questions.

1. when were the studies done? Are they studies or clinical trials? What is

the level of certainty?

2. Are they concept/theoretical studies or are they done on real people?

3. What is the purpose of the study? Is it done by someone who will make

money from the study or is it done by an independent group that is looking

at the protocol for more pure knowledge? This is especially important when

you are looking at treatment alternatives. Eg is pomegranate juice studies

that are done by the pomegranate board vs. studies done by an independent

source.

4. Which patients based on the trial results are appropriate or

inappropriate for the treatment?

When I look at this paper I can't do any of that because sources are not

credited. There is just not enough information. It is interesting to read

and something to think about but it is not a conversation stopper. Looks

like it may have been part of a package that U of PA produced to get

approval to build their facility but I do not know.

There are two sides to the debate and each side has valid points to make.

People making decisions need to read both sides so they are reaching a

balanced and reasonable decision with as much information as they can get.

I am not trying to sell or convince anyone to take an action in either

direction.

Patients need to be aware that evidence based medicine is important and

gaining additional support in the cancer community. Unfortunately in

prostate cancer, there are many areas that lack adequate evidence at the

current time. In an era with decreasing funds for research and treatments we

need to be asking, demanding that we get the research that you need to make

adequate decisions based on good strong clinical principles. Until we get

that men will just be participating in something like a clinical trial

without gathering of information.

All that said because we do not have the proof that doesn't mean that

something is untrue. It means that we just do not have the information

necessary to say that it is. There have been many instances where what we

thought was true many not be after a trial is done. The SELECT trial is an

example. Co morbidities may not be identified without the information from

clinical trials. An example of this is the potential relationship between

diabetes and heart issues and hormone therapies.

Kathy

________________________________

From: ProstateCancerSupport

[mailto:ProstateCancerSupport ] On Behalf Of Fuller

Sent: Saturday, December 13, 2008 8:46 AM

To: ProstateCancerSupport

Subject: Proton Information

Please do not consider this to be a continuation of the discussion between

Dr. Chodak and me.

Here is a link to information on proton therapy that may be useful to anyone

newly diagnosed with prostate cancer and in search of a treatment. The

author is a respected member of the medical community, and a board certified

radiation oncologist.

http://protoninfo.com/Articles/UniversityofPennsylvania.pdf

<http://protoninfo.com/Articles/UniversityofPennsylvania.pdf>

Best wishes to all for a great Holiday Season, and may we all get " Low PSAs "

in our stockings.

Until next year!

Fuller

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It seesm you are quite invested in promoting proton even to the point of citing

information that is neither published, nor validated. This reference is not

from a published study, does not at all describe how the data are collected and

again does not talk about survival. I am certain you will keep promoting this

but it is because of this kind of inadequate information that many well

respected prostate cancer specialists other than myself are concerned about the

marketing of this method without providing anyone with information that can be

analyzed like other treatments can. This is not about being against proton but

being against misinformation. This is so self-serving, it is sad to see.

>

> Subject: Proton Information

> To: ProstateCancerSupport

> Date: Saturday, December 13, 2008, 1:45 PM

> Please do not consider this to be a continuation of the

> discussion

> between Dr. Chodak and me.

>

>

>

> Here is a link to information on proton therapy that may be

> useful to

> anyone newly diagnosed with prostate cancer and in search

> of a

> treatment. The author is a respected member of the medical

> community,

> and a board certified radiation oncologist.

>

>

>

> http://protoninfo.com/Articles/UniversityofPennsylvania.pdf

> <http://protoninfo.com/Articles/UniversityofPennsylvania.pdf>

>

>

>

> Best wishes to all for a great Holiday Season, and may we

> all get

> " Low PSAs " in our stockings.

>

>

>

> Until next year!

>

>

> Fuller

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, here we go again. You know me well enough to know that I cannot let that last post go unanswered. The tone and message was rude and discoourteous. Once again I state categorically that I in no way am interested in "marketing" proton therapy.

So here goes:

Dr. Chodak:

Please review this:

http://jama.ama-assn.org/cgi/content/full/294/10/1233

Please note that this is NOT a "pro-proton" study, but is a trial to determine if proton dose escalation is a reasonable way to proceed. The thing to recognize is that the study reports data that DOES indicate that proton therapy is a reasonable treatment to consider with all the others. Note the following first sentence under "Comment." (Emphasis below is mine)

-----------------------------------------------------

"Although this trial validates the use of proton-beam therapy, it did not test whether this modality is more or less efficacious than other less expensive and more commonly available conformal techniques or, for that matter, than brachytherapy or surgery.[References] 15, 26-27

Nor do the results justify using doses above 79 Gy outside the context of a clinical trial.

In summary, this randomized controlled trial shows an advantage to high-dose over conventional-dose conformal radiation in terms of freedom from biochemical failure for men with low- and intermediate-risk prostate cancer. This advantage was safely achieved with only a small increase in grade 2 rectal morbidity and no increase in GU morbidity by the use of highly conformal radiation techniques that included 3-dimensional photon and proton beams."

--------------------------------------------------------

Dr. Chodak, do you recognize Dr. Zeitman's credentials? Note that he doesnt even recommend protons for prostate cancer now, (he recommends IMRT, apparently because he believes the proton system at MGH is better used to treat other cancers.) But I think you can believe this data, and please note that the "five year data" issue you say is not available is addressed. Also there are plenty of "published" references here. Please do not argue the methods used in the report here; if you disagree, write the authors of the article. Note also that the errors are noted in the follow-up.

My point is that published peer-reviewed references do exist that indicate proton therapy is a recognized and established treatment. New studies will continue to be published as the new centers come on-line which will add to the existing database. Proton therapy as a treatment modality therefore should be carefully examined. Those of us that have experienced it can and do testify to the minimal side effects.

And you can put this in thebank: This is my last post referencing Dr. Chodak or his comments.

Fuller

>> It seesm you are quite invested in promoting proton even to the point of citing information that is neither published, nor validated. This reference is not from a published study, does not at all describe how the data are collected and again does not talk about survival. I am certain you will keep promoting this but it is because of this kind of inadequate information that many well respected prostate cancer specialists other than myself are concerned about the marketing of this method without providing anyone with information that can be analyzed like other treatments can. This is not about being against proton but being against misinformation. This is so self-serving, it is sad to see.> > > >

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The fact that a randomized study using protons for a boost showing it better

than lower dose photon alone says nothing about the long term effect of protons

alone nor the ability of proton boost to be any different than photon boost.

Protons deserve further evaluation but in the meantime everyone should

acknowledge that we still do not know how protons compare to other therapies. I

do not understand why you fail to recognize this. It does not mean people

should not choose protons, but it does mean that people should not be told we

know how it compares to the other options.

It would be unfortunate for you to not post this to your group.

>

> Subject: Re: Proton Information

> To: ProstateCancerSupport

> Date: Sunday, December 14, 2008, 12:48 AM

> , here we go again. You know me well enough to know

> that I cannot

> let that last post go unanswered. The tone and message was

> rude and

> discoourteous. Once again I state categorically that I in

> no way am

> interested in " marketing " proton therapy.

>

> So here goes:

>

>

>

> Dr. Chodak:

>

> Please review this:

>

> http://jama.ama-assn.org/cgi/content/full/294/10/1233

> <http://jama.ama-assn.org/cgi/content/full/294/10/1233>

>

> Please note that this is NOT a " pro-proton "

> study, but is a trial to

> determine if proton dose escalation is a reasonable way to

> proceed. The

> thing to recognize is that the study reports data that DOES

> indicate

> that proton therapy is a reasonable treatment to consider

> with all the

> others. Note the following first sentence under

> " Comment. " (Emphasis

> below is mine)

>

> -----------------------------------------------------

>

> " Although this trial validates the use of proton-beam

> therapy, it did

> not test whether this modality is more or less efficacious

> than other

> less expensive and more commonly available conformal

> techniques or, for

> that matter, than brachytherapy or surgery.[References] 15,

> 26-27

>

> Nor do the results justify using doses above 79 Gy outside

> the context

> of a clinical trial.

>

> In summary, this randomized controlled trial shows an

> advantage to

> high-dose over conventional-dose conformal radiation in

> terms of freedom

> from biochemical failure for men with low- and

> intermediate-risk

> prostate cancer. This advantage was safely achieved with

> only a small

> increase in grade 2 rectal morbidity and no increase in GU

> morbidity by

> the use of highly conformal radiation techniques that

> included

> 3-dimensional photon and proton beams. "

>

> --------------------------------------------------------

>

> Dr. Chodak, do you recognize Dr. Zeitman's credentials?

> Note that he

> doesnt even recommend protons for prostate cancer now, (he

> recommends

> IMRT, apparently because he believes the proton system at

> MGH is better

> used to treat other cancers.) But I think you can believe

> this data, and

> please note that the " five year data " issue you

> say is not available is

> addressed. Also there are plenty of " published "

> references here.

> Please do not argue the methods used in the report here; if

> you

> disagree, write the authors of the article. Note also that

> the errors

> are noted in the follow-up.

>

> My point is that published peer-reviewed references do

> exist that

> indicate proton therapy is a recognized and established

> treatment. New

> studies will continue to be published as the new centers

> come on-line

> which will add to the existing database. Proton therapy as

> a treatment

> modality therefore should be carefully examined. Those of

> us that have

> experienced it can and do testify to the minimal side

> effects.

>

> And you can put this in thebank: This is my last post

> referencing Dr.

> Chodak or his comments.

>

> Fuller

>

>

>

>

> >

> > It seesm you are quite invested in promoting proton

> even to the point

> of citing information that is neither published, nor

> validated. This

> reference is not from a published study, does not at all

> describe how

> the data are collected and again does not talk about

> survival. I am

> certain you will keep promoting this but it is because of

> this kind of

> inadequate information that many well respected prostate

> cancer

> specialists other than myself are concerned about the

> marketing of this

> method without providing anyone with information that can

> be analyzed

> like other treatments can. This is not about being against

> proton but

> being against misinformation. This is so self-serving, it

> is sad to see.

> >

> >

>

> >

> >

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