Damon,

Lynn Martell, (you will meet him at the Weds. meetings) says:
"Nothing happens by accident!"

Fuller

--- In protoninfo@yahoogroups.com, damon butler <at_the_turn@...> wrote:
>
> I would like to ask a million questions as I am starting my "journey" next
week meeting with Dr. Kaiser and getting my pod fitted.  I also feel that there
is a reason I have been allowed to get proton therapy at Loma Linda and want to
go there with an attitude of giving and not getting.  Please feel free to
contact me with tips, information, etc.
>
> Damon
>
>
>
>
>
> ________________________________
> From: chanelsurferdude <williamfhubbard@...>
> To: protoninfo@yahoogroups.com
> Sent: Wed, November 18, 2009 9:32:07 AM
> Subject: [protoninfo] 2 to go...
>
>  
> I can't believe the time has gone by so quickly...and I never would have
thought the negative situation I was in a few short months ago would now be
looked at as a positive situation.
>
> I am so grateful to Loma Linda and they way they treat patients here. It was
always my #1 choice, and things fell into place to allow me to come here for
Proton Beam Therapy.
>
> Thanks to all who counseled me and offered help in my time of need. Fuller,
you have been incredible in your wisdom and knowledge of PCa and I want to thank
you personally for your help and your wonderful book.
>
> If you are new to this whole thing, please consider Protons. I have had no
side effects and gained much while I have been at Loma Linda, including a new
perspective, focus and understanding of my purpose.
>
> Feel free to contact me for any questions.
>

Who says: "My husband has prostate cancer and although Loma Linda sent info and
a book right away, they have not returned three emails or called for a
consultation as they said they would in their forms. "

Please tell us your first name.

Here you will find several women who were their partners advocates, and helped
their men as you are helping yours.

First of all be proactive: CALL LOMA LINDA!  Do not rely on their response to
e-mails. If you seem to be getting a lack of response, ask to have the number
for the chief scheduling person.

Second: Have all your husbands records related to his prostate cancer in ready
to fax form; it will be required before they will confirm a consultation.

For our group, we need your husbands "stats" -- his age, date diagnosed, PSA
when diagnosed, Gleason Score from the biopsy, and other tests run.  This will
help us provide meaningful advice.  Your location will also help.

Please post here soon, we want to help.  If you still get no response from Loma
Linda let me know.  It may be they are back to a long wait and are trying to
catch up with applications, but they should respond.

Thanks for helping your husband!

Fuller

I can't believe the time has gone by so quickly...and I never would have thought
the negative situation I was in a few short months ago would now be looked at as
a positive situation.

I am so grateful to Loma Linda and they way they treat patients here. It was
always my #1 choice, and things fell into place to allow me to come here for
Proton Beam Therapy.

Thanks to all who counseled me and offered help in my time of need. Fuller, you
have been incredible in your wisdom and knowledge of PCa and I want to thank you
personally for your help and your wonderful book.

If you are new to this whole thing, please consider Protons. I have had no side
effects and gained much while I have been at Loma Linda, including a new
perspective, focus and understanding of my purpose.

Feel free to contact me for any questions.

Dr.R. Charles Nichols Jr., of the UF Proton Therapy Institue here in
Jacksonville just read a paper at a recent conference studying the difference
between the spread of protons and photons beyond the target area based upon the
level of testosterone.  In his study he found that the level of testosterone in
photon patients was significantly lower, post treatment, than in proton patients
- indicating in his thinking that the degree of spread of photons beyond the
target area, into the testicles, was much greater in photon therapy than in
proton therapy.  I do not have the citation for his paper but could obtain it if
required.  Paul Preuss, patient at Jacksonville UFPTI

Well JC, the "secondary cancer" neutron thing in my opinion is somewhat of a red
herring thrown out there by some who have a bit of an axe to grind.  For
instance I first ran across the neutron secondary caused by proton therapy thing
on a site of a well known doc who specializes in the combo of brachy and photon
radiation.

Because there is less tissue irradiated by proton therapy than photon therapy,
the risk of secondary cancers is less.  This is my opinion. It is shared by ALL
radiation oncologists knowledgeable about proton therapy. I strongly suggest
that you prepare a list of questions, and get yourself a consult at one of the
proton centers.  Then ask one who IS a true expert on proton therapy your
questions, and be very critical and ask for journalistic references.

There is a risk of getting too bogged down in information in researching
prostate cancer treatment modalities, because there is so much info out there
and much of it is different and conflicting.  It takes a while to start being
able to discern what is pertinent, relevant, and likely to be correct.  Then you
have to put yourself in the equation and decide if it affects your decision.

Fuller

--- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@...> wrote:
>
> Thanks to those who have offerred contact info, testimonials, etc. for M.D.
Anderson.  I'll follow up with you if that's the direction I decide to go.
>
> I am concerned about neutrons generated from proton therapy and the associated
risk of secondary cancers.  Does anyone have any data or insight to help
quantify that risk?
>
> -JC
>
> --- In protoninfo@yahoogroups.com, "Joe Landry" <jelandry@> wrote:
> >
> >
> > I don't think the waiting list is an issue. No one's quoting what it is but
I don't hear complaints. Either I can find out or you can call the main number
and ask for Veronica.  For information and referrals, call toll-free:
1-866-632-4PTC (4782)
> >
> > If you get the pencil beam gantry then you don't have to wait on the CNC
machining shop for the 6 brass and 2 Lucite plates. It's just a "simple matter
of programming."  I can't get the director to say it's more precise but rather
that it's like either spray painting with a hand held gun for scattering nozzles
or with pencil beam an air brush.  You do get fewer neutrons and potentially
less worry about secondary cancers with pencil beam.
> >
> > Something new - The MDACC Proton Therapy Center has started accepting cases
above the intermediate risk category and are also are now using fiducial markers
(carbon and not gold or metal). Researchers from the center published a paper
discussing how metal fiducials cause shadows in the CT simulation and in the
treatment.  Having marker reduces the set up time for the therapists.
> >
> > Best regards
> > JOE
> >
> >
>

Thanks to those who have offerred contact info, testimonials, etc. for M.D.
Anderson.  I'll follow up with you if that's the direction I decide to go.

I am concerned about neutrons generated from proton therapy and the associated
risk of secondary cancers.  Does anyone have any data or insight to help
quantify that risk?

-JC

--- In protoninfo@yahoogroups.com, "Joe Landry" <jelandry@...> wrote:
>
>
> I don't think the waiting list is an issue. No one's quoting what it is but I
don't hear complaints. Either I can find out or you can call the main number and
ask for Veronica.  For information and referrals, call toll-free: 1-866-632-4PTC
(4782)
>
> If you get the pencil beam gantry then you don't have to wait on the CNC
machining shop for the 6 brass and 2 Lucite plates. It's just a "simple matter
of programming."  I can't get the director to say it's more precise but rather
that it's like either spray painting with a hand held gun for scattering nozzles
or with pencil beam an air brush.  You do get fewer neutrons and potentially
less worry about secondary cancers with pencil beam.
>
> Something new - The MDACC Proton Therapy Center has started accepting cases
above the intermediate risk category and are also are now using fiducial markers
(carbon and not gold or metal). Researchers from the center published a paper
discussing how metal fiducials cause shadows in the CT simulation and in the
treatment.  Having marker reduces the set up time for the therapists.
>
> Best regards
> JOE
>
>

----- Original Message -----

From: Fuller

To: protoninfo@yahoogroups.com

Sent: Friday, November 13, 2009 8:26 PM

Subject: [protoninfo] Re: New User JC

 

JC, Joe, (Joe Landry) is the go-to guy for info on M. D. Anderson.

Go here: http://www.protonpals.net/

Fuller

--- In protoninfo@yahoogroups.com, "Joe Landry" <jelandry@...> wrote:
>
>
> I don't think the waiting list is an issue. No one's quoting what it is but I don't hear complaints. Either I can find out or you can call the main number and ask for Veronica. For information and referrals, call toll-free: 1-866-632-4PTC (4782)
>
> If you get the pencil beam gantry then you don't have to wait on the CNC machining shop for the 6 brass and 2 Lucite plates. It's just a "simple matter of programming." I can't get the director to say it's more precise but rather that it's like either spray painting with a hand held gun for scattering nozzles or with pencil beam an air brush. You do get fewer neutrons and potentially less worry about secondary cancers with pencil beam.
>
> Something new - The MDACC Proton Therapy Center has started accepting cases above the intermediate risk category and are also are now using fiducial markers (carbon and not gold or metal). Researchers from the center published a paper discussing how metal fiducials cause shadows in the CT simulation and in the treatment. Having marker reduces the set up time for the therapists.
>
> Best regards
> JOE
>
>
> ----- Original Message -----
> From: Fuller
> To: protoninfo@yahoogroups.com
> Sent: Friday, November 13, 2009 2:01 PM
> Subject: [protoninfo] Re: New User JC
>
>
>
> JC,
>
> Are you at all limited in WHERE you wish to receive treatment?
>
> Honest question. If not, and you will go anywhere, then go to M. D. Anderson if you can get them to commit to treatment on the one gantry which has the pencil scanning beam technology. That is the most up-to-date modern technology in the U. S. currently active, and Anderson has an extremely high rating in so far as cancer treatment centers. I have no idea how long their waiting list is if any.
>
> Someone here might know.
>
> Fuller
>

JC, Joe, (Joe Landry) is the go-to guy for info on M. D. Anderson.

Go here: http://www.protonpals.net/

Fuller

--- In protoninfo@yahoogroups.com, "Joe Landry" <jelandry@...> wrote:
>
>
> I don't think the waiting list is an issue. No one's quoting what it is but I
don't hear complaints. Either I can find out or you can call the main number and
ask for Veronica.  For information and referrals, call toll-free: 1-866-632-4PTC
(4782)
>
> If you get the pencil beam gantry then you don't have to wait on the CNC
machining shop for the 6 brass and 2 Lucite plates. It's just a "simple matter
of programming."  I can't get the director to say it's more precise but rather
that it's like either spray painting with a hand held gun for scattering nozzles
or with pencil beam an air brush.  You do get fewer neutrons and potentially
less worry about secondary cancers with pencil beam.
>
> Something new - The MDACC Proton Therapy Center has started accepting cases
above the intermediate risk category and are also are now using fiducial markers
(carbon and not gold or metal). Researchers from the center published a paper
discussing how metal fiducials cause shadows in the CT simulation and in the
treatment.  Having marker reduces the set up time for the therapists.
>
> Best regards
> JOE
>
>
>   ----- Original Message -----
>   From: Fuller
>   To: protoninfo@yahoogroups.com
>   Sent: Friday, November 13, 2009 2:01 PM
>   Subject: [protoninfo] Re: New User JC
>
>
>
>   JC,
>
>   Are you at all limited in WHERE you wish to receive treatment?
>
>   Honest question. If not, and you will go anywhere, then go to M. D. Anderson
if you can get them to commit to treatment on the one gantry which has the
pencil scanning beam technology. That is the most up-to-date modern technology
in the U. S. currently active, and Anderson has an extremely high rating in so
far as cancer treatment centers. I have no idea how long their waiting list is
if any.
>
>   Someone here might know.
>
>   Fuller
>

----- Original Message -----

From: Fuller

To: protoninfo@yahoogroups.com

Sent: Friday, November 13, 2009 2:01 PM

Subject: [protoninfo] Re: New User JC

 

JC,

Are you at all limited in WHERE you wish to receive treatment?

Honest question. If not, and you will go anywhere, then go to M. D. Anderson if you can get them to commit to treatment on the one gantry which has the pencil scanning beam technology. That is the most up-to-date modern technology in the U. S. currently active, and Anderson has an extremely high rating in so far as cancer treatment centers. I have no idea how long their waiting list is if any.

Someone here might know.

Fuller

--- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@...> wrote:
>
> "Protons are Protons" is like saying "Radiation is Radiation" or "Football is Football". All NFL teams play by the same rules, with the same balls, and have the same access to talented players, coaches, facilities, schemes, etc. but the outcome is not exactly the same. How these Proton Centers of Excellence integrate thier technology and skill, apply lessons learned, set software control schemes, and a thousand other details, into an overall best practice, makes a difference. Maybe the difference for me works out to be 92% vs. 88%, and isn't statistically significant, but I'll take an 8% chance of failure over a 12% chance when the stakes are this high. And I'll take the Saints over the Rams this week :)
>
> You are probably right that proton therapy limits collateral damage, but I want enough of that collateral damage to eradicate any stray cancer cells that might be lurking in the vicinity. That's really my chief concern with protons at the moment, and one of the main reasons I don't see surgery as viable, for me (along with some potentially awful side effects). As I evaluate the different radiation options, it will probably come down to the right balance of collateral damage I feel is right for my personal situation.
>
> -JC
>
> --- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@> wrote:
> >
> > You said: ", but I have also noticed data that seems to suggest Loma
> > Linda is more successful than other proton centers in the US"
> >
> > JC, the fact is that Loma Linda has been doing proton therapy since
> > 1990, when the system was completed and activated. Boston (MGH) was
> > next about ten years later, then the others came along, MPRI Bloomington
> > IN, Anderson in Hoouston, UFPTI in JAX, and the latest, Oklahoma City.
> >
> > I would NOT make the statement that any one center is more successful
> > than another!
> >
> > Perhaps more experience, but the only reason there is more data for LL
> > is that they have been doing it the longest. The "success" rate for all
> > will turn out the same in my opinion. "Protons are Protons," and the
> > protocols are not too different although there are some differences. The
> > basic tital dosage is about the same for prostate cancer, at around 76
> > to 80 Gy.
> >
> > I do think the pencil scanning beam is the more modern approach,
> > requiring new technology, but that would not make me rule out one center
> > over another. I truly that you must consider all factors, with
> > certainly a primary one being the travel factor (distance from your home
> > to the center).
> >
> > Regarding the different forms of radiation, it IS my considered and
> > studied opinion based on a lot of research, that protons provide the
> > least damage to surrounding structures and organs. Read the File "Rossi
> > on Protons," and some of the others.
> >
> > Take your time and do your studies. I think that you will come to the
> > same conclusion.
> >
> > Regarding Loma Linda and the "fluff"---I am a "graduate"of the LL
> > proton Center (finished March '07), And I can assure you that is is not
> > "fluff." Loma Linda University Medical Center is a Seventh-day
> > Adventist institution, and they take their religious connections very
> > seriously. That does not mean they are forced on you, it just means
> > they are serious in the manner in which they provide the services and
> > care that you receive if you are a patient (they call you a "guest") at
> > their hospital.
> >
> > There is a LOT to process for you, and there is a lot of confusing and
> > conflicting information. I strongly recommend that you take your time
> > and study your options carefully. You will find many references in our
> > Files and Links; and use Google!
> >
> > One step at a time!
> >
> > Fuller
> >
> > --- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@> wrote:
> > >
> > > So far, NO ONE at all has advocated surgery for me, including my
> > urologist. But it seems everyone I talk to wants to talk me out of
> > surgery, first thing. Thanks, but I dismissed that pretty quickly
> > already. I'm pretty much in the radiation camp, with protons in the
> > lead, but still sifting through other options. I work in the nuclear
> > field, and so my study includes technical issues to sort out the pros
> > and cons. But I'm only a week into this thing....
> > >
> > > It does seem that technology and treatments are being refined. Does
> > anyone have experience or knowledge with the new pencil beam proton
> > system in Houston? Sounds interesting, but I have also noticed data
> > that seems to suggest Loma Linda is more successful than other proton
> > centers in the US - I'm guessing due to experience and/or perhaps the
> > holistic approach there (which includes all the fluffy stuff I said
> > didn't matter to me :)
> > >
> > > -JC
> > >
> > > --- In protoninfo@yahoogroups.com, damon butler at_the_turn@ wrote:
> > > >
> > > > Well JC,
> > > >
> > > > Let me explain my opinion...I am 49 (not 74 or 69) and those
> > questions do matter to me in the priority they should be placed in.�
> > Definitely life expectancy is always the bottom line with any treatment
> > option but after the several hundreds of hours I've been studying this
> > and trying to find some answers what we are going hear now will probably
> > be totally different in 5-10 years, that seems to be the way treating
> > this thing goes.� I am going to Loma Linda because of the very
> > reason .... my age and my concern with quality of life over surgery,
> > etc.� I've been told two times by two different doctors that surgery
> > is the way for somebody as young and healthy as I am but to me that is
> > the very reason I don't want surgery (side effect issues...etc.).
> > > >
> > > > To me maintaining a positive attitude and not allowing stress to
> > rule my life is also a priority and that is why I am interested in how
> > I'm treated and where I'm treated.� Proton therapy seems to also
> > give me just as good of a chance of living for several more years as any
> > other treatment options.� If I can go somewhere that I'm treated
> > more than just a "bottom line number", have a solid chance of being
> > cured and maintaining as close of a "normal" life as possible AND be
> > able to play golf (I'm a golf nut anyway) I'm not really seeing the
> > downside of this thing..lol!� I am also humbled by the individuals I
> > read that have cancer and aren't able to get the treatment they want
> > because of insurance issues, etc. (I was there...man oh man) or are
> > battling this for whatever reason.� My heart goes out to those
> > individuals and families who have more courage and willpower than I will
> > probably ever know.
> > > > I wish you the best and hope you settle on a treatment option and
> > things go smooth for you.
> > > >
> > > > Damon
> > > >
> > > >
> > > >
> > > >
> > > > ________________________________
> > > > From: jnc0101 jnc0101@
> > > > To: protoninfo@yahoogroups.com
> > > > Sent: Wed, November 11, 2009 1:50:22 PM
> > > > Subject: [protoninfo] Re: New User JC (This is a long post)
> > > >
> > > > �
> > > > My comments on age have more to do with my planned life expectancy.
> > All the treatment options seem to tout their 5,10,15 year survival rates
> > which generally seem to be similar for my Partin table situation. If I
> > was 65, or 74, or even 55, I'd be happy looking at a 10-15 year survival
> > rate, but I'm not eligible for social security yet, and age IS a
> > criteria for me.
> > > >
> > > > I appreciate all of the testimonials, but frankly I don't care about
> > how friendly the staff is, or whether the balloon is uncomfortable, or
> > if I can play golf -- I want some level of 'feel good' about my long
> > term prospects for cure first, and quality of life second, from whatever
> > treatment option I choose. And long term for me means something
> > different than most men confronting prostate cancer.
> > > >
> > > > -JC
> > > >
> > > > > > 3. From your comment on age, I think that you must have read
> > somewhere that some other treatment is better for a younger man.�
> > � This is absolutely false. Age in my opinion should not be a
> > criteria if you are considering proton therapy. I am 76 and had my
> > treatment at LL when I was 74. We have members here of all ages.�
> > Bob Marckini has a story about a 33 year old in his latest newsletter,
> > and I am quoting it here. (Bob is a personal friend, and I know that he
> > will not mind.)� � �
> > > >
> > >
> >
>

JC,

Are you at all limited in WHERE you wish to receive treatment?

Honest question.  If not, and you will go anywhere, then go to M. D. Anderson if
you can get them to commit to treatment on the one gantry which has the pencil
scanning beam technology.  That is the most up-to-date modern technology in the
U. S. currently active, and Anderson has an extremely high rating in so far as
cancer treatment centers. I have no idea how long their waiting list is if any.

Someone here might know.

Fuller

--- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@...> wrote:
>
> "Protons are Protons" is like saying "Radiation is Radiation" or "Football is
Football".  All NFL teams play by the same rules, with the same balls, and have
the same access to talented players, coaches, facilities, schemes, etc. but the
outcome is not exactly the same.  How these Proton Centers of Excellence
integrate thier technology and skill, apply lessons learned, set software
control schemes, and a thousand other details, into an overall best practice,
makes a difference.  Maybe the difference for me works out to be 92% vs. 88%,
and isn't statistically significant, but I'll take an 8% chance of failure over
a 12% chance when the stakes are this high.  And I'll take the Saints over the
Rams this week :)
>
> You are probably right that proton therapy limits collateral damage, but I
want enough of that collateral damage to eradicate any stray cancer cells that
might be lurking in the vicinity.  That's really my chief concern with protons
at the moment, and one of the main reasons I don't see surgery as viable, for me
(along with some potentially awful side effects).  As I evaluate the different
radiation options, it will probably come down to the right balance of collateral
damage I feel is right for my personal situation.
>
> -JC
>
> --- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@> wrote:
> >
> > You said: ", but I have also noticed data that seems to suggest Loma
> > Linda is more successful than other proton centers in the US"
> >
> > JC, the fact is that Loma Linda has been doing proton therapy since
> > 1990, when the system was completed and activated.  Boston (MGH) was
> > next about ten years later, then the others came along, MPRI Bloomington
> > IN, Anderson in Hoouston, UFPTI in JAX, and the latest, Oklahoma City.
> >
> > I would NOT make the statement that any one center is more successful
> > than another!
> >
> >   Perhaps more experience, but the only reason there is more data for LL
> > is that they have been doing it the longest. The "success" rate for all
> > will turn out the same in my opinion.  "Protons are Protons," and the
> > protocols are not too different although there are some differences. The
> > basic tital dosage is about the same for prostate cancer, at around 76
> > to 80 Gy.
> >
> > I do think the pencil scanning beam is the more modern approach,
> > requiring new technology, but that would not make me rule out one center
> > over another.  I truly that you must consider all factors, with
> > certainly a primary one being the travel factor (distance from your home
> > to the center).
> >
> > Regarding the different forms of radiation, it IS my considered and
> > studied opinion based on a lot of research, that protons provide the
> > least damage to surrounding structures and organs.  Read the File "Rossi
> > on Protons," and some of the others.
> >
> > Take your time and do your studies. I think that you will come to the
> > same conclusion.
> >
> > Regarding Loma Linda and the "fluff"---I am a "graduate"of  the LL
> > proton Center (finished March '07), And I can assure you that is is not
> > "fluff."  Loma Linda University Medical Center is a Seventh-day
> > Adventist institution, and they take their religious connections very
> > seriously.  That does not mean they are forced on you, it just means
> > they are serious in the manner in which they provide the services and
> > care that you receive if you are a patient (they call you a "guest") at
> > their hospital.
> >
> > There is a LOT to process for you, and there is a lot of confusing and
> > conflicting information.  I strongly recommend that you take your time
> > and study your options carefully. You will find many references in our
> > Files and Links; and use Google!
> >
> > One step at a time!
> >
> > Fuller
> >
> > --- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@> wrote:
> > >
> > > So far, NO ONE at all has advocated surgery for me, including my
> > urologist.  But it seems everyone I talk to wants to talk me out of
> > surgery, first thing.  Thanks, but I dismissed that pretty quickly
> > already.  I'm pretty much in the radiation camp, with protons in the
> > lead, but still sifting through other options.  I work in the nuclear
> > field, and so my study includes technical issues to sort out the pros
> > and cons.  But I'm only a week into this thing....
> > >
> > > It does seem that technology and treatments are being refined.  Does
> > anyone have experience or knowledge with the new pencil beam proton
> > system in Houston?  Sounds interesting, but I have also noticed data
> > that seems to suggest Loma Linda is more successful than other proton
> > centers in the US - I'm guessing due to experience and/or perhaps the
> > holistic approach there (which includes all the fluffy stuff I said
> > didn't matter to me :)
> > >
> > > -JC
> > >
> > > --- In protoninfo@yahoogroups.com, damon butler at_the_turn@ wrote:
> > > >
> > > > Well JC,
> > > >
> > > > Let me explain my opinion...I am 49 (not 74 or 69) and those
> > questions do matter to me in the priority they should be placed in.�
> > Definitely life expectancy is always the bottom line with any treatment
> > option but after the several hundreds of hours I've been studying this
> > and trying to find some answers what we are going hear now will probably
> > be totally different in 5-10 years, that seems to be the way treating
> > this thing goes.�  I am going to Loma Linda because of the very
> > reason .... my age and my concern with quality of life over surgery,
> > etc.�  I've been told two times by two different doctors that surgery
> > is the way for somebody as young and healthy as I am but to me that is
> > the very reason I don't want surgery (side effect issues...etc.).
> > > >
> > > > To me maintaining a positive attitude and not allowing stress to
> > rule my life is also a priority and that is why I am interested in how
> > I'm treated and where I'm treated.�  Proton therapy seems to also
> > give me just as good of a chance of living for several more years as any
> > other treatment options.�  If I can go somewhere that I'm treated
> > more than just a "bottom line number", have a solid chance of being
> > cured and maintaining as close of a "normal" life as possible AND be
> > able to play golf (I'm a golf nut anyway) I'm not really seeing the
> > downside of this thing..lol!�  I am also humbled by the individuals I
> > read that have cancer and aren't able to get the treatment they want
> > because of insurance issues, etc. (I was there...man oh man) or are
> > battling this for whatever reason.�  My heart goes out to those
> > individuals and families who have more courage and willpower than I will
> > probably ever know.
> > > > I wish you the best and hope you settle on a treatment option and
> > things go smooth for you.
> > > >
> > > > Damon
> > > >
> > > >
> > > >
> > > >
> > > > ________________________________
> > > > From: jnc0101 jnc0101@
> > > > To: protoninfo@yahoogroups.com
> > > > Sent: Wed, November 11, 2009 1:50:22 PM
> > > > Subject: [protoninfo] Re: New User JC (This is a long post)
> > > >
> > > > �
> > > > My comments on age have more to do with my planned life expectancy.
> > All the treatment options seem to tout their 5,10,15 year survival rates
> > which generally seem to be similar for my Partin table situation. If I
> > was 65, or 74, or even 55, I'd be happy looking at a 10-15 year survival
> > rate, but I'm not eligible for social security yet, and age IS a
> > criteria for me.
> > > >
> > > > I appreciate all of the testimonials, but frankly I don't care about
> > how friendly the staff is, or whether the balloon is uncomfortable, or
> > if I can play golf -- I want some level of 'feel good' about my long
> > term prospects for cure first, and quality of life second, from whatever
> > treatment option I choose. And long term for me means something
> > different than most men confronting prostate cancer.
> > > >
> > > > -JC
> > > >
> > > > > > 3. From your comment on age, I think that you must have read
> > somewhere that some other treatment is better for a younger man.�
> > �  This is absolutely false. Age in my opinion should not be a
> > criteria if you are considering proton therapy. I am 76 and had my
> > treatment at LL when I was 74. We have members here of all ages.�
> > Bob Marckini has a story about a 33 year old in his latest newsletter,
> > and I am quoting it here. (Bob is a personal friend, and I know that he
> > will not mind.)� � �
> > > >
> > >
> >
>

"Protons are Protons" is like saying "Radiation is Radiation" or "Football is
Football".  All NFL teams play by the same rules, with the same balls, and have
the same access to talented players, coaches, facilities, schemes, etc. but the
outcome is not exactly the same.  How these Proton Centers of Excellence
integrate thier technology and skill, apply lessons learned, set software
control schemes, and a thousand other details, into an overall best practice,
makes a difference.  Maybe the difference for me works out to be 92% vs. 88%,
and isn't statistically significant, but I'll take an 8% chance of failure over
a 12% chance when the stakes are this high.  And I'll take the Saints over the
Rams this week :)

You are probably right that proton therapy limits collateral damage, but I want
enough of that collateral damage to eradicate any stray cancer cells that might
be lurking in the vicinity.  That's really my chief concern with protons at the
moment, and one of the main reasons I don't see surgery as viable, for me (along
with some potentially awful side effects).  As I evaluate the different
radiation options, it will probably come down to the right balance of collateral
damage I feel is right for my personal situation.

-JC

--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> You said: ", but I have also noticed data that seems to suggest Loma
> Linda is more successful than other proton centers in the US"
>
> JC, the fact is that Loma Linda has been doing proton therapy since
> 1990, when the system was completed and activated.  Boston (MGH) was
> next about ten years later, then the others came along, MPRI Bloomington
> IN, Anderson in Hoouston, UFPTI in JAX, and the latest, Oklahoma City.
>
> I would NOT make the statement that any one center is more successful
> than another!
>
>   Perhaps more experience, but the only reason there is more data for LL
> is that they have been doing it the longest. The "success" rate for all
> will turn out the same in my opinion.  "Protons are Protons," and the
> protocols are not too different although there are some differences. The
> basic tital dosage is about the same for prostate cancer, at around 76
> to 80 Gy.
>
> I do think the pencil scanning beam is the more modern approach,
> requiring new technology, but that would not make me rule out one center
> over another.  I truly that you must consider all factors, with
> certainly a primary one being the travel factor (distance from your home
> to the center).
>
> Regarding the different forms of radiation, it IS my considered and
> studied opinion based on a lot of research, that protons provide the
> least damage to surrounding structures and organs.  Read the File "Rossi
> on Protons," and some of the others.
>
> Take your time and do your studies. I think that you will come to the
> same conclusion.
>
> Regarding Loma Linda and the "fluff"---I am a "graduate"of  the LL
> proton Center (finished March '07), And I can assure you that is is not
> "fluff."  Loma Linda University Medical Center is a Seventh-day
> Adventist institution, and they take their religious connections very
> seriously.  That does not mean they are forced on you, it just means
> they are serious in the manner in which they provide the services and
> care that you receive if you are a patient (they call you a "guest") at
> their hospital.
>
> There is a LOT to process for you, and there is a lot of confusing and
> conflicting information.  I strongly recommend that you take your time
> and study your options carefully. You will find many references in our
> Files and Links; and use Google!
>
> One step at a time!
>
> Fuller
>
> --- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@> wrote:
> >
> > So far, NO ONE at all has advocated surgery for me, including my
> urologist.  But it seems everyone I talk to wants to talk me out of
> surgery, first thing.  Thanks, but I dismissed that pretty quickly
> already.  I'm pretty much in the radiation camp, with protons in the
> lead, but still sifting through other options.  I work in the nuclear
> field, and so my study includes technical issues to sort out the pros
> and cons.  But I'm only a week into this thing....
> >
> > It does seem that technology and treatments are being refined.  Does
> anyone have experience or knowledge with the new pencil beam proton
> system in Houston?  Sounds interesting, but I have also noticed data
> that seems to suggest Loma Linda is more successful than other proton
> centers in the US - I'm guessing due to experience and/or perhaps the
> holistic approach there (which includes all the fluffy stuff I said
> didn't matter to me :)
> >
> > -JC
> >
> > --- In protoninfo@yahoogroups.com, damon butler at_the_turn@ wrote:
> > >
> > > Well JC,
> > >
> > > Let me explain my opinion...I am 49 (not 74 or 69) and those
> questions do matter to me in the priority they should be placed in.�
> Definitely life expectancy is always the bottom line with any treatment
> option but after the several hundreds of hours I've been studying this
> and trying to find some answers what we are going hear now will probably
> be totally different in 5-10 years, that seems to be the way treating
> this thing goes.�  I am going to Loma Linda because of the very
> reason .... my age and my concern with quality of life over surgery,
> etc.�  I've been told two times by two different doctors that surgery
> is the way for somebody as young and healthy as I am but to me that is
> the very reason I don't want surgery (side effect issues...etc.).
> > >
> > > To me maintaining a positive attitude and not allowing stress to
> rule my life is also a priority and that is why I am interested in how
> I'm treated and where I'm treated.�  Proton therapy seems to also
> give me just as good of a chance of living for several more years as any
> other treatment options.�  If I can go somewhere that I'm treated
> more than just a "bottom line number", have a solid chance of being
> cured and maintaining as close of a "normal" life as possible AND be
> able to play golf (I'm a golf nut anyway) I'm not really seeing the
> downside of this thing..lol!�  I am also humbled by the individuals I
> read that have cancer and aren't able to get the treatment they want
> because of insurance issues, etc. (I was there...man oh man) or are
> battling this for whatever reason.�  My heart goes out to those
> individuals and families who have more courage and willpower than I will
> probably ever know.
> > > I wish you the best and hope you settle on a treatment option and
> things go smooth for you.
> > >
> > > Damon
> > >
> > >
> > >
> > >
> > > ________________________________
> > > From: jnc0101 jnc0101@
> > > To: protoninfo@yahoogroups.com
> > > Sent: Wed, November 11, 2009 1:50:22 PM
> > > Subject: [protoninfo] Re: New User JC (This is a long post)
> > >
> > > �
> > > My comments on age have more to do with my planned life expectancy.
> All the treatment options seem to tout their 5,10,15 year survival rates
> which generally seem to be similar for my Partin table situation. If I
> was 65, or 74, or even 55, I'd be happy looking at a 10-15 year survival
> rate, but I'm not eligible for social security yet, and age IS a
> criteria for me.
> > >
> > > I appreciate all of the testimonials, but frankly I don't care about
> how friendly the staff is, or whether the balloon is uncomfortable, or
> if I can play golf -- I want some level of 'feel good' about my long
> term prospects for cure first, and quality of life second, from whatever
> treatment option I choose. And long term for me means something
> different than most men confronting prostate cancer.
> > >
> > > -JC
> > >
> > > > > 3. From your comment on age, I think that you must have read
> somewhere that some other treatment is better for a younger man.�
> �  This is absolutely false. Age in my opinion should not be a
> criteria if you are considering proton therapy. I am 76 and had my
> treatment at LL when I was 74. We have members here of all ages.�
> Bob Marckini has a story about a 33 year old in his latest newsletter,
> and I am quoting it here. (Bob is a personal friend, and I know that he
> will not mind.)� � �
> > >
> >
>

Good morning Fuller, et al.

Thought some of you might find this article from this morning's Sun of interest:

http://tinyurl.com/yegfmog

One thing I did not emphasize:  The "success" rate for any treatment depends far
more on the physical characteristics of the persons disease (Gleason PSA, etc)
than the treatment chosen.

One other thing, do NOT worry too much about where you fall in the Partin
Tables. These are statistical results only. I am reminded of the old saying:
There are "Lies, damned lies, and statistics."  You are an individual and your
results may be entirely different than the statistical norm. With my initial
Partin Table results, I should have died last year!!!

Fuller

--- In protoninfo@yahoogroups.com, "Fuller" <protoninfo@...> wrote:
>
> Life expectancy: The "success" rate for ALL treatment modalities is
> believe it or not roughly the same!
>
>   Regardless of age, in my opinion, you should put quality of life FIRST
> in your assessment of the various options, ESPECIALLY if you are a young
> man!!!!
> I cannot emphasize that enough!
>
> I was 74 when diagnosed, and spent four months agonizing over treatment
> choices!
>
> Knowing what I know now, if I had been 47 instead of 74, I would have
> immediately chosen proton therapy for myself.
>
> Think of it this way: There is a treatment that avoids the likelihood of
> incontinence and impotence, decreases the chances of secondary radiation
> problems, require no in-patient hospitalization, no recovery time, no
> pain, no catheters, and an approximate one-hour per day allotment for
> the treatment.  Compare each of these factors to each of the other
> treatments and throw in quality of life, and decide which you prefer.
>
> Now that may sound like a "hard sell,"  but it is as truthful as I can
> make it.
>
> Fuller
>
> --- In protoninfo@yahoogroups.com, "jnc0101" <jnc0101@> wrote:
> >
> > My comments on age have more to do with my planned life expectancy.
> All the treatment options seem to tout their 5,10,15 year survival rates
> which generally seem to be similar for my Partin table situation. If I
> was 65, or 74, or even 55, I'd be happy looking at a 10-15 year survival
> rate, but I'm not eligible for social security yet, and age IS a
> criteria for me.
> >
> > I appreciate all of the testimonials, but frankly I don't care about
> how friendly the staff is, or whether the balloon is uncomfortable, or
> if I can play golf -- I want some level of 'feel good' about my long
> term prospects for cure first, and quality of life second, from whatever
> treatment option I choose.  And long term for me means something
> different than most men confronting prostate cancer.
> >
> > -JC
> >
> >
> > > > 3. From your comment on age, I think that you must have read
> somewhere that some other treatment is better for a younger man.�
> �  This is absolutely false. Age in my opinion should not be a
> criteria if you are considering proton therapy. I am 76 and had my
> treatment at LL when I was 74. We have members here of all ages.�
> Bob Marckini has a story about a 33 year old in his latest newsletter,
> and I am quoting it here. (Bob is a personal friend, and I know that he
> will not mind.)� � �
> >
>

 

So far, NO ONE at all has advocated surgery for me, including my urologist. But it seems everyone I talk to wants to talk me out of surgery, first thing. Thanks, but I dismissed that pretty quickly already. I'm pretty much in the radiation camp, with protons in the lead, but still sifting through other options. I work in the nuclear field, and so my study includes technical issues to sort out the pros and cons. But I'm only a week into this thing....

It does seem that technology and treatments are being refined. Does anyone have experience or knowledge with the new pencil beam proton system in Houston? Sounds interesting, but I have also noticed data that seems to suggest Loma Linda is more successful than other proton centers in the US - I'm guessing due to experience and/or perhaps the holistic approach there (which includes all the fluffy stuff I said didn't matter to me :)

-JC

--- In protoninfo@yahoogroups.com, damon butler <at_the_turn@...> wrote:
>
> Well JC,
>
> Let me explain my opinion...I am 49 (not 74 or 69) and those questions do matter to me in the priority they should be placed in.  Definitely life expectancy is always the bottom line with any treatment option but after the several hundreds of hours I've been studying this and trying to find some answers what we are going hear now will probably be totally different in 5-10 years, that seems to be the way treating this thing goes.  I am going to Loma Linda because of the very reason .... my age and my concern with quality of life over surgery, etc.  I've been told two times by two different doctors that surgery is the way for somebody as young and healthy as I am but to me that is the very reason I don't want surgery (side effect issues...etc.).
>
> To me maintaining a positive attitude and not allowing stress to rule m y life is also a priority and that is why I am interested in how I'm treated and where I'm treated.  Proton therapy seems to also give me just as good of a chance of living for several more years as any other treatment options.  If I can go somewhere that I'm treated more than just a "bottom line number", have a solid chance of being cured and maintaining as close of a "normal" life as possible AND be able to play golf (I'm a golf nut anyway) I'm not really seeing the downside of this thing..lol!  I am also humbled by the individuals I read that have cancer and aren't able to get the treatment they want because of insurance issues, etc. (I was there...man oh man) or are battling this for whatever reason.  My heart goes out to those individuals and families who have more courage and willpower than I will probably ever know.
> I wish you the best and hope you settle on a treatment option and things go smooth for you.
>
> Damon
>
>
>
>
> ________________________________
> From: jnc0101 <jnc0101@...>
> To: protoninfo@yahoogroups.com
> Sent: Wed, November 11, 2009 1:50:22 PM
> Subject: [protoninfo] Re: New User JC (This is a long post)
>
>  
> My comments on age have more to do with my planned life expectancy. All the treatment options seem to tout their 5,10,15 year survival rates which generally seem to be similar for my Partin table situation. If I was 65, or 74, or even 55, I'd be happy looking at a 10-15 year survival rate, but I'm not eligible for social security yet, and age IS a criteria for me.
>
> I appreciate all of the testimonials, but frankly I don't care about how friendly the staff is, or whether the balloon is uncomfortable, or if I can play golf -- I want some level of 'feel good' about my long term prospects for cure first, and quality of life second, from whatever treatment option I choose. And long term for me means something different than most men confronting prostate cancer.
>
> -JC
>
> > > 3. From your comment on age, I think that you must have read somewhere that some other treatment is better for a younger man.   This is absolutely false. Age in my opinion should not be a criteria if you are considering proton therapy. I am 76 and had my treatment at LL when I was 74. We have members here of all ages.  Bob Marckini has a story about a 33 year old in his latest newsletter, and I am quoting it here. (Bob is a personal friend, and I know that he will not mind.)   
>

So far, NO ONE at all has advocated surgery for me, including my urologist.  But
it seems everyone I talk to wants to talk me out of surgery, first thing. 
Thanks, but I dismissed that pretty quickly already.  I'm pretty much in the
radiation camp, with protons in the lead, but still sifting through other
options.  I work in the nuclear field, and so my study includes technical issues
to sort out the pros and cons.  But I'm only a week into this thing....

It does seem that technology and treatments are being refined.  Does anyone have
experience or knowledge with the new pencil beam proton system in Houston? 
Sounds interesting, but I have also noticed data that seems to suggest Loma
Linda is more successful than other proton centers in the US - I'm guessing due
to experience and/or perhaps the holistic approach there (which includes all the
fluffy stuff I said didn't matter to me :)

-JC

--- In protoninfo@yahoogroups.com, damon butler <at_the_turn@...> wrote:
>
> Well JC,
>
> Let me explain my opinion...I am 49 (not 74 or 69) and those questions do
matter to me in the priority they should be placed in.  Definitely life
expectancy is always the bottom line with any treatment option but after the
several hundreds of hours I've been studying this and trying to find some
answers what we are going hear now will probably be totally different in 5-10
years, that seems to be the way treating this thing goes.  I am going to Loma
Linda because of the very reason .... my age and my concern with quality of life
over surgery, etc.  I've been told two times by two different doctors that
surgery is the way for somebody as young and healthy as I am but to me that is
the very reason I don't want surgery (side effect issues...etc.).
>
> To me maintaining a positive attitude and not allowing stress to rule my life
is also a priority and that is why I am interested in how I'm treated and where
I'm treated.  Proton therapy seems to also give me just as good of a chance of
living for several more years as any other treatment options.  If I can go
somewhere that I'm treated more than just a "bottom line number", have a solid
chance of being cured and maintaining as close of a "normal" life as possible
AND be able to play golf (I'm a golf nut anyway) I'm not really seeing the
downside of this thing..lol!  I am also humbled by the individuals I read that
have cancer and aren't able to get the treatment they want because of insurance
issues, etc. (I was there...man oh man) or are battling this for whatever
reason.  My heart goes out to those individuals and families who have more
courage and willpower than I will probably ever know.
> I wish you the best and hope you settle on a treatment option and things go
smooth for you.
>
> Damon
>
>
>
>
> ________________________________
> From: jnc0101 <jnc0101@...>
> To: protoninfo@yahoogroups.com
> Sent: Wed, November 11, 2009 1:50:22 PM
> Subject: [protoninfo] Re: New User JC (This is a long post)
>
>  
> My comments on age have more to do with my planned life expectancy. All the
treatment options seem to tout their 5,10,15 year survival rates which generally
seem to be similar for my Partin table situation. If I was 65, or 74, or even
55, I'd be happy looking at a 10-15 year survival rate, but I'm not eligible for
social security yet, and age IS a criteria for me.
>
> I appreciate all of the testimonials, but frankly I don't care about how
friendly the staff is, or whether the balloon is uncomfortable, or if I can play
golf -- I want some level of 'feel good' about my long term prospects for cure
first, and quality of life second, from whatever treatment option I choose. And
long term for me means something different than most men confronting prostate
cancer.
>
> -JC
>
> > > 3. From your comment on age, I think that you must have read somewhere
that some other treatment is better for a younger man.   This is
absolutely false. Age in my opinion should not be a criteria if you are
considering proton therapy. I am 76 and had my treatment at LL when I was 74. We
have members here of all ages.  Bob Marckini has a story about a 33 year old
in his latest newsletter, and I am quoting it here. (Bob is a personal friend,
and I know that he will not mind.)   
>

My comments on age have more to do with my planned life expectancy. All the
treatment options seem to tout their 5,10,15 year survival rates which generally
seem to be similar for my Partin table situation. If I was 65, or 74, or even
55, I'd be happy looking at a 10-15 year survival rate, but I'm not eligible for
social security yet, and age IS a criteria for me.

I appreciate all of the testimonials, but frankly I don't care about how
friendly the staff is, or whether the balloon is uncomfortable, or if I can play
golf -- I want some level of 'feel good' about my long term prospects for cure
first, and quality of life second, from whatever treatment option I choose.  And
long term for me means something different than most men confronting prostate
cancer.

-JC


> > 3. From your comment on age, I think that you must have read somewhere that
some other treatment is better for a younger man.   This is absolutely false.
Age in my opinion should not be a criteria if you are considering proton
therapy. I am 76 and had my treatment at LL when I was 74. We have members here
of all ages.  Bob Marckini has a story about a 33 year old in his latest
newsletter, and I am quoting it here. (Bob is a personal friend, and I know that
he will not mind.)   

Damon,

The balloon is nothing to worry about. When you get down there you'll discover
there is much dry humor about the balloon.  No, it's not even in the same
category as a biopsy (biopsy was the worse in my opinion).  Again, embrace the
balloon :) you'll find the humor in it i'm sure.  The catscan takes about 15
minutes.  They need to complete this so Dr. Kaiser can complete his proton
treatment plan specifically for your body.  They have loads of checks and
balances and this is one of them.  The Pod takes about 30-40 mins..  Ryan will
probably be the guy who creates your pod.  He will have you lie in the shell of
the pod and pour this mixture that hardens to the contour of your body.  This
ensures that when your lying in your pod about to receive protons you don't
accidentally move.

Don m.

--- In protoninfo@yahoogroups.com, damon butler <at_the_turn@...> wrote:
>
> Don,
>
> Thanks, I have been assigned (or maybe he to me...lol) to Dr. Kaiser.  I did
have questions about the pod/ CT Scan....how long does that take and is it to
big of a "pain"?  I've been told that the balloon isn't nothing compared to a
biopsy....lol...true?
>
> Damon
>
>
>
>
> ________________________________
> From: DASM <donaldmuridan@...>
> To: protoninfo@yahoogroups.com
> Sent: Tue, November 10, 2009 9:55:27 PM
> Subject: [protoninfo] Re: New User JC (This is a long post)
>
>  
> Damon,
>
> Have fun enjoying a sunny southern California winter :). If you are assigned
to gantry #3 tell Ken (the lead technician) I said "hello". Typically after your
consult your treatment will start in approx. 2 weeks. The day of your
consultation goes fairly fast. You will have a meet and greet with one of proton
docs. This will be your opportunity to ask him all your questions(bring a list).
They will probably schedule your pod to be made the same day. Then off to the
cat scan where you'll get to experience your first balloon :). You'll then meet
with someone in adminstration where you'll sign all the paperwork. During this
day you'll receive a printed calendar of your start to finish dates.
>
> My best,
>
> don m.
>
> --- In protoninfo@yahoogro ups.com, damon butler <at_the_turn@ ...> wrote:
> >
> > I wanted to add that I am 49 and just got the great news that they had a
cancellation (I was originally scheduled for a Jan. 4th consult and was a little
concerned about the time/waiting) and am now going to Loma Linda for a Nov. 24th
consult.  I feel it was a definite answer to prayer and it was the good news
that couldn't have come at a better time.  I'm open and welcome to any "words
of wisdom" from anyone that has been there.  I can't wait to begin this part
of my journey and use my experience to help others.
> >
> > Damon
> >
> >
> >
> >
> > ____________ _________ _________ __
> > From: Fuller <protoninfo@ ...>
> > To: protoninfo@yahoogro ups.com
> > Sent: Tue, November 10, 2009 6:45:08 AM
> > Subject: [protoninfo] Re: New User JC (This is a long post)
> >
> >  
> > Hi JC, and thanks for the response. Your situation is a bit unusual in that
you KNOW personally about Loma Linda and Proton Therapy!
> >
> >
> >
> > You said:"...My father-in-law had proton therapy at Loma Linda 15 or so
years ago, with few side effects and is cancer free.  That has certainly got
my attention right now."
> >
> > That says a lot! 
> >
> > Now let me give you my opinions, and I invite our other members to chime in
as well (Are you listening, Cal?)
> >
> > 1. There is no reason to wait about contacting Loma Linda,  Do so now and
ask for their patient information package to be mailed to you. The information
you receive will be helpful. In addition, go ahead and ask for a consultation
date. There is (or was recently) a wait time at Loma Linda. if there is a time
frame that is better for you ask to be but on a wait list for that time. LL
sometimes has cancellations.
> >
> > 2. In the collective opinion of this group, I think that I can safely say
that we believe Proton Therapy for prostate cancer is the new "platinum"
standard in terms of "cure" rates and quality of life both during and following
treatment.  Time will prove us correct.
> > (I don't like the term "cure" because with cancer there are no guarantees,
and you must remain vigilant after ANY treatment.)
> >
> > 3. From your comment on age, I think that you must have read somewhere that
some other treatment is better for a younger man.   This is absolutely
false. Age in my opinion should not be a criteria if you are considering proton
therapy. I am 76 and had my treatment at LL when I was 74. We have members here
of all ages.  Bob Marckini has a story about a 33 year old in his latest
newsletter, and I am quoting it here. (Bob is a personal friend, and I know that
he will not mind.)   
> >
> >
> > "It is true that I am only 33 years old. I am the youngest prostate cancer
patient ever to be treated at LLUMC. Feel free to mention this in the BOB Tales
newsletter. I think it is my duty to tell people about my story because I feel
it is important that people know prostate cancer can happen to younger guys too,
and it is worth a simple blood test to find this out. I have been reminding my
brothers that they should have a PSA test just to have a baseline reference
point. Prostate cancer runs in our family.
> > As far as the treatment at LLUMC, it can't be beat as far as I'm concerned.
I personally had minimal side effects during and after treatment. My PSA has
dropped from 2.7 to 0.82 already. There is life after treatment at LLUMC. You do
retain parts of your life that are very important to you; I'm definitely proof
of that. My wife and I were hoping for another child before I found out about
the cancer, but figured that was not going to happen after my treatment. Wrong.
My wife is pregnant now. We are very happily surprised. That is definitely proof
that you DO retain function after proton therapy."
> > >- source:  Bob Marckini's November 2009 Bob Tales Newsletter.
> > 4.  There are some things you need to know: The treatment takes eight
weeks and you need to plan on actual nine weeks including the consultation and
preps. If your job is such that you can work remotely that is a definite plus,
as rentals with high speed Internet are plentiful.
> >
> >  The treatment is expensive, and some insurance does NOT cover it.  ou
need to explore this aspect immediately. Appeals  are sometimes successful
and sometimes not. Be sure and let us know about this, because there is help
available.
> >
> > 5. Idaho Falls is about equal distance from Loma Lnda and the new center in
Oklahoma City. If the wait list at Loma Linda is long, I would recommend that
you consider Oklahoma as an alternative.  Contact them and ask for
information, it won't hurt.
> >
> > Thanks again for joining, and please keep us posted. And let us know if that
LL trained doc does not recommend protons!
> >
> > Fuller
> >
> >
> > --- In protoninfo@yahoogro ups.com, JC <jnc0101@> wrote:
> > >
> > > Hi all,
> > >
> > > Call me JC, from Idaho Falls, ID. 
> > >
> > > I'm 44 and was diagnosed with prostate cancer last week.  PSA is 2.8,
GS 3+3=6, T2c with five of ten biopsy sites positive (ranging from 15 to
30%).  No indications that it's anywhere but in the capsule.  Family
history with my father.  All I've talked to is the urologist, who recommended
brachytherapy.  Meeting with a radiation oncologist (Loma Linda trained) next
week.  Plan to contact Loma Linda based on what I learn from that discussion.
> > >
> > > I took a little survey test several years ago in Time magazine that
said my life expectancy was 112 years, based on family history and personal
habits.  I don't really want to live that long, but I'd like to live another
44+ years.  Of course, I'd like some quality of life as well.  I'm told my
cancer is curable, so I'm searching for the right balance of cure vs. side
effects for my situation.  My father-in-law had proton therapy at Loma Linda
15 or so years ago, with few side effects and is cancer free.  That has
certainly got my attention right now.  What I don't know is if it's the best
option for a 44-yr old.  My father chose brachytherapy seven years ago, which
slowed things down but didn't cure him.  He gets periodic radiation treatment
for his bone cancer now, and takes heavy hormones, and is at peace with his
fate.  I don't know the details (stage, test results, etc.) of his initial
diagnoses and he has
>  forgotten.
> > >
> > > I'd appreciate any wisdom I can glean from this group.
> > >
> >
>

The purpose of the "Pod" of course is to put you approximately the same exact
position for each treatment. the final adjustment is done (in millimeter
accuracy) before the "Beam On" phase.

The CT Scan is a critical part of your treatment plan. The purpose is to provide
a map of your pelvic area, locating the prostate gland in relationship to all
the bony structures. About 200 "slices" are taken, moving only a few mm between
each picture.

So before this is done they require that you be in the completed pod, and
prepped exactly like you will be for the treatment. This means you will drink
about 16 ounces of water (to extend the bladder) and have the balloon inserted
(then inflated with a water solution) to extend the rectal wall and "push" and
secure the prostate gland against the pelvic bone. The CT Scan is normally done
after the pod is prepared, the same day, but it could be the following day.

Brief description of your pod experience: You drink your water, you go to the
dressing room, remove everything but socks and undershirt, and put on the
standard hospital gown open in the back. When called, you go to the "Pod Room"
and meet (if he is still there) "Tony the Pod Man." (if he is there, tell him
that "Sonny" the guy from KSC in Florida said hi!)

You lie down on your back on a large sheet of plastic draped over the pod, which
is an 18 inch diameter PVC pipe cut longitudinally in half, with the ends
closed.

Tony does his "mixture" thing with a giant milkshake mixer, then pours the
mixture under the plastic sheet all along your lower extremities. You must lie
still while the mixture rises up around you and starts to harden. It is a little
like that "Great Stuff" foam that you get at Home Depot. Slightly warm. Quite a
relaxing experience, I actually almost went to sleep.

After it hardens, Tony instructs you to turn on your side, and you are
introduced to your first balloon. This is a "non-event" for most. I have only
heard of one individual that had a problem with this, and finally figured out
that he had a bad hemorrhoid problem. The balloon is inserted using something
like a baby enema inserting tool, then inflated with a previously prepared
syringe of water solution via an attached plastic tube. See Photos LLUMC and Me,
last photo if the following link does not work:
http://groups.yahoo.com/group/protoninfo/photos/album/532724804/pic/1649611654/v\
iew?picmode=&mode=tn&order=ordinal&start=1&count=20&dir=asc

After the balloon, you are wheeled to the CT Room for the Scan. Following that
you are brought back to the pod room, Tony removes the balloon, and you go to
the dressing room , get dressed and leave.  Total time about two hours or so
usually.

Gotta go, the "one who must be obeyed" calls.

Fuller


--- In protoninfo@yahoogroups.com, damon butler <at_the_turn@...> wrote:
>
> Don,
>
> Thanks, I have been assigned (or maybe he to me...lol) to Dr. Kaiser.  I did
have questions about the pod/ CT Scan....how long does that take and is it to
big of a "pain"?  I've been told that the balloon isn't nothing compared to a
biopsy....lol...true?
>
> Damon
>
>
>
>
> ________________________________
> From: DASM <donaldmuridan@...>
> To: protoninfo@yahoogroups.com
> Sent: Tue, November 10, 2009 9:55:27 PM
> Subject: [protoninfo] Re: New User JC (This is a long post)
>
>  
> Damon,
>
> Have fun enjoying a sunny southern California winter :). If you are assigned
to gantry #3 tell Ken (the lead technician) I said "hello". Typically after your
consult your treatment will start in approx. 2 weeks. The day of your
consultation goes fairly fast. You will have a meet and greet with one of proton
docs. This will be your opportunity to ask him all your questions(bring a list).
They will probably schedule your pod to be made the same day. Then off to the
cat scan where you'll get to experience your first balloon :). You'll then meet
with someone in adminstration where you'll sign all the paperwork. During this
day you'll receive a printed calendar of your start to finish dates.
>
> My best,
>
> don m.
>
> --- In protoninfo@yahoogro ups.com, damon butler <at_the_turn@ ...> wrote:
> >
> > I wanted to add that I am 49 and just got the great news that they had a
cancellation (I was originally scheduled for a Jan. 4th consult and was a little
concerned about the time/waiting) and am now going to Loma Linda for a Nov. 24th
consult.  I feel it was a definite answer to prayer and it was the good news
that couldn't have come at a better time.  I'm open and welcome to any "words
of wisdom" from anyone that has been there.  I can't wait to begin this part
of my journey and use my experience to help others.
> >
> > Damon
> >
> >
> >
> >
> > ____________ _________ _________ __
> > From: Fuller <protoninfo@ ...>
> > To: protoninfo@yahoogro ups.com
> > Sent: Tue, November 10, 2009 6:45:08 AM
> > Subject: [protoninfo] Re: New User JC (This is a long post)
> >
> >  
> > Hi JC, and thanks for the response. Your situation is a bit unusual in that
you KNOW personally about Loma Linda and Proton Therapy!
> >
> >
> >
> > You said:"...My father-in-law had proton therapy at Loma Linda 15 or so
years ago, with few side effects and is cancer free.  That has certainly got
my attention right now."
> >
> > That says a lot! 
> >
> > Now let me give you my opinions, and I invite our other members to chime in
as well (Are you listening, Cal?)
> >
> > 1. There is no reason to wait about contacting Loma Linda,  Do so now and
ask for their patient information package to be mailed to you. The information
you receive will be helpful. In addition, go ahead and ask for a consultation
date. There is (or was recently) a wait time at Loma Linda. if there is a time
frame that is better for you ask to be but on a wait list for that time. LL
sometimes has cancellations.
> >
> > 2. In the collective opinion of this group, I think that I can safely say
that we believe Proton Therapy for prostate cancer is the new "platinum"
standard in terms of "cure" rates and quality of life both during and following
treatment.  Time will prove us correct.
> > (I don't like the term "cure" because with cancer there are no guarantees,
and you must remain vigilant after ANY treatment.)
> >
> > 3. From your comment on age, I think that you must have read somewhere that
some other treatment is better for a younger man.   This is absolutely
false. Age in my opinion should not be a criteria if you are considering proton
therapy. I am 76 and had my treatment at LL when I was 74. We have members here
of all ages.  Bob Marckini has a story about a 33 year old in his latest
newsletter, and I am quoting it here. (Bob is a personal friend, and I know that
he will not mind.)   
> >
> >
> > "It is true that I am only 33 years old. I am the youngest prostate cancer
patient ever to be treated at LLUMC. Feel free to mention this in the BOB Tales
newsletter. I think it is my duty to tell people about my story because I feel
it is important that people know prostate cancer can happen to younger guys too,
and it is worth a simple blood test to find this out. I have been reminding my
brothers that they should have a PSA test just to have a baseline reference
point. Prostate cancer runs in our family.
> > As far as the treatment at LLUMC, it can't be beat as far as I'm concerned.
I personally had minimal side effects during and after treatment. My PSA has
dropped from 2.7 to 0.82 already. There is life after treatment at LLUMC. You do
retain parts of your life that are very important to you; I'm definitely proof
of that. My wife and I were hoping for another child before I found out about
the cancer, but figured that was not going to happen after my treatment. Wrong.
My wife is pregnant now. We are very happily surprised. That is definitely proof
that you DO retain function after proton therapy."
> > >- source:  Bob Marckini's November 2009 Bob Tales Newsletter.
> > 4.  There are some things you need to know: The treatment takes eight
weeks and you need to plan on actual nine weeks including the consultation and
preps. If your job is such that you can work remotely that is a definite plus,
as rentals with high speed Internet are plentiful.
> >
> >  The treatment is expensive, and some insurance does NOT cover it.  ou
need to explore this aspect immediately. Appeals  are sometimes successful
and sometimes not. Be sure and let us know about this, because there is help
available.
> >
> > 5. Idaho Falls is about equal distance from Loma Lnda and the new center in
Oklahoma City. If the wait list at Loma Linda is long, I would recommend that
you consider Oklahoma as an alternative.  Contact them and ask for
information, it won't hurt.
> >
> > Thanks again for joining, and please keep us posted. And let us know if that
LL trained doc does not recommend protons!
> >
> > Fuller
> >
> >
> > --- In protoninfo@yahoogro ups.com, JC <jnc0101@> wrote:
> > >
> > > Hi all,
> > >
> > > Call me JC, from Idaho Falls, ID. 
> > >
> > > I'm 44 and was diagnosed with prostate cancer last week.  PSA is 2.8,
GS 3+3=6, T2c with five of ten biopsy sites positive (ranging from 15 to
30%).  No indications that it's anywhere but in the capsule.  Family
history with my father.  All I've talked to is the urologist, who recommended
brachytherapy.  Meeting with a radiation oncologist (Loma Linda trained) next
week.  Plan to contact Loma Linda based on what I learn from that discussion.
> > >
> > > I took a little survey test several years ago in Time magazine that
said my life expectancy was 112 years, based on family history and personal
habits.  I don't really want to live that long, but I'd like to live another
44+ years.  Of course, I'd like some quality of life as well.  I'm told my
cancer is curable, so I'm searching for the right balance of cure vs. side
effects for my situation.  My father-in-law had proton therapy at Loma Linda
15 or so years ago, with few side effects and is cancer free.  That has
certainly got my attention right now.  What I don't know is if it's the best
option for a 44-yr old.  My father chose brachytherapy seven years ago, which
slowed things down but didn't cure him.  He gets periodic radiation treatment
for his bone cancer now, and takes heavy hormones, and is at peace with his
fate.  I don't know the details (stage, test results, etc.) of his initial
diagnoses and he has
>  forgotten.
> > >
> > > I'd appreciate any wisdom I can glean from this group.
> > >
> >
>