I have just been told that the time shown on my Group messages is set
to Pacific Time, and cannot be changed:

" No, you cannot change the timestamp on all your messages as the time
stamp is set to the time on Yahoo!'s mail servers in California
(Pacific Standard Time - PST)."

Still learning---

Deleted, but Reposted.


  My husband, Laws who is 72, was diagnosed with prostate cancer, Feb.
5th, 2008. His PSA was
0.75 & his Gleason score 3+3=6, Prostatic adneocarcinoma/conventional
acinar type. His prostate volume is 23 grams.
I am sure all of you are wondering why he had a biopsy in the first
place. In Sept of '06, his PSA rose from .8 to 1.22. I have a history
of breast cancer & am very conscious of cancer. I persuaded his
urologist to do a biopsy. He did six cores, three in each side. All
cores were normal except one on the left which showed atypical acinar
cells that were not malignant.

The urologist continued to do the DREs & check his PSA which went
down to .8 & in Jan. .75. The urologis said the exam was normal but
Laws said he thought he said the left side felt a little different.
So he did another biopsy & sunk five cores in the area where the
atypical cells were. One was on the right side & was normal. The
report doesn't say but I forgot to ask the urologist if all five
showed cancer. The Dr. did say he couldn't feel the tumor nor did it
show up on the ultra-sound. He said it was very small.

After four posts on the Webmd message board, someone mentioned
Protons which we had never heard of. I did a search & found a lot of
technical information about them. Then I joined the Yahoo Prostate
Cancer Group, which we are very glad we did. There's where we met
Fuller who sent us personal e-mails with much information. …
  Laws was very relieved & thankful when he read the information about
the Proton Beam. He knew about the side effects of other treatments.
He even had an appt. at Vanderbilt for
the robotic surgery.

We have a consultation in Indiana this Wed. We are both nervous &
anxious, partly because on Laws's bone scan showed two focal areas of
mildly increased uptake in the right ribcage on the 8th & 9th ribs
with no correlating plain film findings. The radiologist recommended
another bone scan in three months to rule out metastatic tumors.

The urologist said that they didn't look like tumors to him. He said
he had never had anything to show up on a bone scan with those
numbers after we finally saw the urologist. Feb. has been a very
stressful, terrifying month for both of us, especially Laws of course.

The urologist faxed 40 pages of records to Indiana Fri. We are afraid
the hospital won't accept him for Proton treatment with this scan.
Has anyone of you had an abnormal bone scan that turned out to be
negative? Laws has had four hard falls in the last 12 or so years.

Sorry about the long post, but that is Laws's story.
Thanks,
Marilyn

--- In protoninfo@yahoogroups.com, "Fuller Jones" <protoninfo@...>
wrote:
>
> I am still learning the ins and outs of the Owner/Moderator of this
> Group.  Please bear with me.
> My intention was to welcome new members, and I have missed one it
appears.
>
> Also my time stamp displayed is wrong, is yours?
>
>
> Welcome Bob Collier.  Bob Please list your Statistics if you don't
mind.
> Your age and location may also be of help to the group in any help
or
> questions someone may need or have.
>
> Thanks
>
> Fuller
>
You are doing a great job with this new website Fuller.  Keep up the
good work.  I will highlight it on my blog tomorrow morning.
I spoke with my friend Chuck Martin who is at MD Anderson tonight to
be fitted for his pod tomorrow.  He's flying back home (Illinois)
tomorrow night and will drive to Houston next Friday to start
protons March 10th.  I asked about the possibility of him updating
the group every Friday concerning his experience.  He said he would
like to do that, so I'm meeting him Tuesday night and going over the
site with him.  It should help us to know about any differences
there at MD Anderson compared to Loma Linda, MPRI, Florida, and
Mass. General.

It's great to see new people coming on board.  Thanks for your
interest in creating this site.

Later,
Rick Otey

I am still learning the ins and outs of the Owner/Moderator of this
Group.  Please bear with me.
My intention was to welcome new members, and I have missed one it appears.

Also my time stamp displayed is wrong, is yours?


Welcome Bob Collier.  Bob Please list your Statistics if you don't mind.
Your age and location may also be of help to the group in any help or
questions someone may need or have.

Thanks

Fuller

Hi Sheila,

I wish I could give you more information on Proton Therapy for high
Gleasons. I wrote to many Gleason 9s on the protonbob site. I only got a
couple of responses saying how great LMMC treats their patients but
nothing about their current condition. I wish that we could get more
feedback like the Yana support group. I'll be interested to hear what
the doctors at Mass General has to say.

Bob






-- In protoninfo@yahoogroups.com, shedorman@... wrote:
>
> Hi, my name is Sheila, my husband has an appointment on Friday at
Mass. General to see if he is a candidate for Proton Therapy. His PSA
7.1 and his Gleason #9. Any more info on Proton Therapy would be greatly
appreciated. Thank you.
> Sheila
> n
> -------------- Original message --------------
> From: "Fuller Jones" protoninfo@...
> Welcome to Bob Erickson, who was lucky enough to have started his
application process some time ago, and now has an appointment at LLUMC.
He says:
> "I have PCa, Gleason 9, and PSA 8. Scans were negative. I am going to
LLMC March 11 for consultation and possible treatment.
> Bob Erickson Las Cruces, NM"
>
> I privately asked Bob to tell me what he knew or could find out about
the current delays at Loma Linda, and he provided this to me today:
>
> "One of the patients I talked to that was there last month said they
were not taking new prostate patients until they caught up. When It
talked to [a doctor's nurse] a month ago she said the time between
consultation and treatment was 5 to 6 weeks. When I talked to her last
Friday she said 1 to 3 weeks, so maybe they are clearing out the
backlog. I will find out what I can and let you know."
>
> This sounds very encouraging!!
>
> Fuller
>

--- In protoninfo@yahoogroups.com, "Dr Gordon" <drgordon@...> wrote:
>
> I would be very interested in knowing why only 38 treatments
instead of the 44 or so at LLMC and is the equipment the same, the
Gy the same total etc.  Also, I believe they use just water in the
rectum and no balloon.   Please ask your friend for a complete
description of their protocol.  Thanks and thanks for helping, Don
>
I asked Dr. Thorton at MPRI why I got 44 treatments and he told me
that the dosimetrist prescribes the highest amount of radiation that
each patient can endure.

My friend, Chuck being treated at MD Anderson had a very small
prsotate, I believe he told me 27cc and mine was 43.3cc.  That could
possibly be the diference.

I haven't heard about water in the rectum instead of a balloon, but
I'll be in touch with Chuck Tuesday and I'll ask him that.

I can't speak for Chuck, but I know his passion for helping people
and I believe he'll be honored to share.

Rick Otey

Welcome to Marilyn and Laws, new friends that I have made.

Marilyn says: "My husband was diagnosed with prostate cancer early in
Feb. After much research, he has decided he wants Proton Therapy."

When you have time, please post your husband's stats. and your current
plans.
Thanks for joining.

Fuller

YES!!  Please ask your friend to join, and provide his information to
us.  One of the primary reasons that I wanted to start this Group was
to get members that have treatment at the various proton centers to
explain their experiences, and to explore any differences in the
protocols. That is why I was very happy that you joined, Rick.
Thank you!

Fuller



--- In protoninfo@yahoogroups.com, rick otey <ricksdetailing@...> wrote:
>
> Thanks for clarifying the modulating wheel.  My treatment was in
2005 and some of the more technical stuff has become a little murky.
I guess that speaks to the non-invasiveness of the whole ordeal.
>   I'm thankful that I kept a journal or I might have forgotten the
details of alot of it.
>   A very close friend of mine left this morning for MD Anderson to
get his pod formed.  Then on March 10th he'll begin 38 treatments.
>   If it would benefit those on protoninfo, I would ask him if he
would provide a weekly update of his progress.  As far as I know, he's
the first to be treated at MD Anderson and report on protoninfo.
>   Would that be of interest to you all?  I'm pretty confident he'll
be more than happy to share his story with the group.
>   Rick Otey
>
>

Just a couple of comments on Rick's message (Thanks Rick!)

MPRI seems to have followed the Loma Linda model pretty closely except
for having both left and right treatments on the same day (each had to
be at a level of 0.9 Gy to provide the total 1.8 Gy per day fraction).
This is what I meant in my previous post about the individual centers
establishing their own variations in the treatment and preparation
protocols.

To correct one thing about the modulator wheel: As it was explained
to me, the wheel rpm does not vary to "determine the speed of the
beam." At Loma Linda, I was told that the modulator wheel rpm is
constant, and the wheel physical characteristics are individually
changed to match requirements of the patient. Of course, this may be
another variation at MPRI.

Loma Linda's Glossary page says: "Modulator Wheel - A spinning,
polycarbide wheel with vanes of variable depth. In proton radiation
therapy, protons passing through the thinner vanes travel farther into
the body than those passing through the thicker sections. Different
wheels, with different vanes, can be used to shift the peak energy
(the Bragg peak) to different depths of the tumor."

See: http://www.protons.com/glossary.html for this glossary.

Thus the modulator wheel is the mechanism by which the Bragg Peak is
spread to envelop the entire prostate gland, and along with the other
individual devices, an aperture block and a depth conforming "bolus,"
provide the means to individually match the treatment to the contours
and shape of the patient's gland.

The speed or velocity of the beam is actually the energy of the proton
beam, controlled by the computer system and synchrotron. The velocity
of the beam is what controls the primary depth of penetration, and at
Loma Linda is approximately 225 MeV, or about 2/3 the speed of light.

No need to get technical here, the point is that the beam is precisely
controlled, and the physics of the proton and Bragg Peak are what
deposits most of the energy directly into the prostate and keeps the
radiation to a minimum in non-target areas.

Ricks experience parallels mine; I was very active during and
following the process, and went to the gym at least three times a
week. The physical exercise during radiation is a factor in mitigating
the fatigue that may set in about half way through the treatments.

Fuller

--- In protoninfo@yahoogroups.com, "Rick Otey" <ricksdetailing@...> wrote:
>
> Hi Sharon and Don,
>
> I had my proton therapy at the Midwest Proton Radiotherapy Institute
> in Bloomington, IN from July 27 to Sept. 30, 2005. I was diagnosed
> Feb. 4th 2005 with a tumor staged as T2b, which means that the
> cancer involved more than half of one lobe, but not both sides of
> the prostate. My PSA was 4.1, but rose to 5.0 just before
> treatment. Currently it's 1.2. At MPRI they make an actual body
> mold of the patient from just under the arms to just above the
> knees. The balloon is inserted (no big deal at all) and the x-ray
> is done to match it up with the master CT scan. The modulation
> wheel, which determines the speed of the beam begins to turn. For
> me it rotated at 359 rpm. Once the wheel started I knew the beam
> was soon to arrive. However, there is no point of reference because
> I couldn't feel anything or see anything. No warm spot within me.
> Absolutely nothing. I just laid there enjoying the music that they
> played in the room. Once the left side was done, the robotic table
> spun me around and then the same procedure on the right side. Only
> 30 minutes out of my day. I am a runner and ran at least 4 miles
> everyday during treatment and even participated in a 465 mile leap
> frog run from Memphis, TN. to Peoria, Il. between my 9th and 10th
> treatments. My 9th was on Friday, my 10th was the following
> Monday.
> It's been over two years and I can honestly say that I sure don't
> feel like a cancer survivor. It's like I never had it at all. I
> never experienced any symtoms and to this day don't have any that
> would cause me to go to the doctor to get checked out. I do go
> annually for my check up.
> I spoke with many men on Proton Bob and they all called it a "no
> brainer". In deed it was that for me.
> I'm not sure what the schedule is like for getting into MPRI, but
> it's worth a call. Dr. Thornton and the whole staff are like family
> to me.
> I've heard too many stories from men who chose a treatment because
> their doctor told then what to do. A close friend chose the daVinci
> Robotic surgery in May of 2005. He continues to wear pads in his
> underwear and is not able to enjoy intimacy with his wife.
> I have no problems in those areas and enjoyed my wife every weekend
> I came home. That may be more than you care to know. If so, I'm
> sorry. It's just indication as to how non-invasive proton therapy
> is.
> Great to get to know you.
> Rick Otey
>

-------------- Original message --------------
From: "Fuller Jones" <protoninfo@...>

Welcome to Bob Erickson, who was lucky enough to have started his application process some time ago, and now has an appointment at LLUMC.  He says:
"I have PCa, Gleason 9, and PSA 8. Scans were negative. I am going to LLMC March 11 for consultation and possible treatment.
Bob Erickson Las Cruces, NM"

I privately asked Bob to tell me what he knew or could find out about the current delays at Loma Linda, and he provided this to me today:

"One of the patients I talked to that was there last month said they were not taking new prostate patients until they caught up. When It talked to [a doctor's nurse] a month ago she said the time between consultation and treatment was 5 to 6 weeks. When I talked to her last Friday she said 1 to 3 weeks, so maybe they are clearing out the backlog. I will find out what I can and let you know."

This sounds very encouraging!!

Fuller

Just a couple of comments on Rick's message (Thanks Rick!)

MPRI seems to have followed the Loma Linda model pretty closely except
for having both left and right treatments on the same day (each had to
be at a level of 0.9 Gy to provide the total 1.8 Gy per day fraction).
This is what I meant in my previous post about the individual centers
establishing their own variations in the treatment and preparation
protocols.

To correct one thing about the modulator wheel:  As it was explained
to me, the wheel rpm does not vary to "determine the speed of the
beam." At Loma Linda, I was told that the modulator wheel rpm is
constant, and the wheel physical characteristics are individually
changed to match requirements of the patient. Of course, this may be
another variation at MPRI.

Loma Linda's Glossary page says: "Modulator Wheel - A spinning,
polycarbide wheel with vanes of variable depth. In proton radiation
therapy, protons passing through the thinner vanes travel farther into
the body than those passing through the thicker sections. Different
wheels, with different vanes, can be used to shift the peak energy
(the Bragg peak) to different depths of the tumor."

See: http://www.protons.com/glossary.html  for this glossary.

Thus the modulator wheel is the mechanism by which the Bragg Peak is
spread to envelop the entire prostate gland, and along with the other
individual devices, an aperture block and a depth conforming "bolus,"
provide the means to individually match the treatment to the contours
and shape of the patient's gland.

The speed or velocity of the beam is actually the energy of the proton
beam, controlled by the computer system and synchrotron. The velocity
of the beam is what controls the primary depth of penetration, and at
Loma Linda is approximately 225 MeV, or about 2/3 the speed of light.

No need to get technical here, the point is that the beam is precisely
controlled, and the physics of the proton and Bragg Peak are what
deposits most of the energy directly into the prostate and keeps the
radiation to a minimum in non-target areas.

Ricks experience parallels mine; I was very active during and
following the process, and went to the gym at least three times a
week. The physical exercise during radiation is a factor in mitigating
the fatigue that may set in about half way through the treatments.

Fuller

--- In protoninfo@yahoogroups.com, "Rick Otey" <ricksdetailing@...> wrote:
>
> Hi Sharon and Don,
>
> I had my proton therapy at the Midwest Proton Radiotherapy Institute
> in Bloomington, IN from July 27 to Sept. 30, 2005.  I was diagnosed
> Feb. 4th 2005 with a tumor staged as T2b, which means that the
> cancer involved more than half of one lobe, but not both sides of
> the prostate.  My PSA was 4.1, but rose to 5.0 just before
> treatment.  Currently it's 1.2.  At MPRI they make an actual body
> mold of the patient from just under the arms to just above the
> knees.  The balloon is inserted (no big deal at all) and the x-ray
> is done to match it up with the master CT scan.  The modulation
> wheel, which determines the speed of the beam begins to turn.  For
> me it rotated at 359 rpm.  Once the wheel started I knew the beam
> was soon to arrive.  However, there is no point of reference because
> I couldn't feel anything or see anything.  No warm spot within me.
> Absolutely nothing.  I just laid there enjoying the music that they
> played in the room.  Once the left side was done, the robotic table
> spun me around and then the same procedure on the right side.  Only
> 30 minutes out of my day.  I am a runner and ran at least 4 miles
> everyday during treatment and even participated in a 465 mile leap
> frog run from Memphis, TN. to Peoria, Il. between my 9th and 10th
> treatments.  My 9th was on Friday, my 10th was the following
> Monday.
> It's been over two years and I can honestly say that I sure don't
> feel like a cancer survivor.  It's like I never had it at all.  I
> never experienced any symtoms and to this day don't have any that
> would cause me to go to the doctor to get checked out.  I do go
> annually for my check up.
> I spoke with many men on Proton Bob and they all called it a "no
> brainer".  In deed it was that for me.
> I'm not sure what the schedule is like for getting into MPRI, but
> it's worth a call.  Dr. Thornton and the whole staff are like family
> to me.
> I've heard too many stories from men who chose a treatment because
> their doctor told then what to do.  A close friend chose the daVinci
> Robotic surgery in May of 2005.  He continues to wear pads in his
> underwear and is not able to enjoy intimacy with his wife.
> I have no problems in those areas and enjoyed my wife every weekend
> I came home.  That may be more than you care to know.  If so, I'm
> sorry.  It's just indication as to how non-invasive proton therapy
> is.
> Great to get to know you.
> Rick Otey
>

--- In protoninfo@yahoogroups.com, "sharon93_19008" <sfgordon93@...>
wrote:
>
>     Thank you, Fuller, for starting this website and for your
answers
> to the questions about the various proton beam sites.  And thank
you,
> Laurel, for adding to our information about the balloons.  This
group
> is such a wealth of knowledge.  Also, thanks Rick for giving us
the
> link to your blog; there's a wealth of knowledge there too.
>
>      Don was diagnosed just one month ago.  It was his 3rd biopsy
and
> obviously the others (2003 and 2005)were negative.  This time,
1/12
> cores was positive, PSA 4.2, 3+3+6, T1C.  Don initially explored
> robotic surgery, but we joined several online support groups and
have
> learned about many other alternatives.  Don is planning to try to
get
> a consultation at Loma Linda.  If this is not possible, he will
> consider the other proton centers; this is why he is asking so
many
> questions about comparisons between them.
>
>      Rick, I see from your blog that you had treatment in
Indiana.
> Can you please answer the questions that Fuller answered as they
> pertain to the center in Indiana?  Thanks.
>
>                                     Sharon and Don from PA
>
Hi Sharon and Don,

I had my proton therapy at the Midwest Proton Radiotherapy Institute
in Bloomington, IN from July 27 to Sept. 30, 2005.  I was diagnosed
Feb. 4th 2005 with a tumor staged as T2b, which means that the
cancer involved more than half of one lobe, but not both sides of
the prostate.  My PSA was 4.1, but rose to 5.0 just before
treatment.  Currently it's 1.2.  At MPRI they make an actual body
mold of the patient from just under the arms to just above the
knees.  The balloon is inserted (no big deal at all) and the x-ray
is done to match it up with the master CT scan.  The modulation
wheel, which determines the speed of the beam begins to turn.  For
me it rotated at 359 rpm.  Once the wheel started I knew the beam
was soon to arrive.  However, there is no point of reference because
I couldn't feel anything or see anything.  No warm spot within me.
Absolutely nothing.  I just laid there enjoying the music that they
played in the room.  Once the left side was done, the robotic table
spun me around and then the same procedure on the right side.  Only
30 minutes out of my day.  I am a runner and ran at least 4 miles
everyday during treatment and even participated in a 465 mile leap
frog run from Memphis, TN. to Peoria, Il. between my 9th and 10th
treatments.  My 9th was on Friday, my 10th was the following
Monday.
It's been over two years and I can honestly say that I sure don't
feel like a cancer survivor.  It's like I never had it at all.  I
never experienced any symtoms and to this day don't have any that
would cause me to go to the doctor to get checked out.  I do go
annually for my check up.
I spoke with many men on Proton Bob and they all called it a "no
brainer".  In deed it was that for me.
I'm not sure what the schedule is like for getting into MPRI, but
it's worth a call.  Dr. Thornton and the whole staff are like family
to me.
I've heard too many stories from men who chose a treatment because
their doctor told then what to do.  A close friend chose the daVinci
Robotic surgery in May of 2005.  He continues to wear pads in his
underwear and is not able to enjoy intimacy with his wife.
I have no problems in those areas and enjoyed my wife every weekend
I came home.  That may be more than you care to know.  If so, I'm
sorry.  It's just indication as to how non-invasive proton therapy
is.
Great to get to know you.
Rick Otey

It worked!

Sure would be great to have the sound presentation to go with these
slides, wouldn't it! Thanks for posting it.

Sonny




--- In protoninfo@yahoogroups.com, LaurelFace@... wrote:
>
> _http://ptcog.web.psi.ch/PTCOG45/Monday%20Talks/27grover.pdf_
> (http://ptcog.web.psi.ch/PTCOG45/Monday%20Talks/27grover.pdf)
this is the most
> comprehensive presentation I have seen so far on the use of the
rectal balloon at Loma
> Linda. It clearly shows the why they use it and just how  much
rectal tissue is
> spared as a result.
>
> Hope this works.
>
> Laurel
>
>

Thank you, Fuller, for starting this website and for your answers
to the questions about the various proton beam sites.  And thank you,
Laurel, for adding to our information about the balloons.  This group
is such a wealth of knowledge.  Also, thanks Rick for giving us the
link to your blog; there's a wealth of knowledge there too.

      Don was diagnosed just one month ago.  It was his 3rd biopsy and
obviously the others (2003 and 2005)were negative.  This time, 1/12
cores was positive, PSA 4.2, 3+3+6, T1C.  Don initially explored
robotic surgery, but we joined several online support groups and have
learned about many other alternatives.  Don is planning to try to get
a consultation at Loma Linda.  If this is not possible, he will
consider the other proton centers; this is why he is asking so many
questions about comparisons between them.

      Rick, I see from your blog that you had treatment in Indiana.
Can you please answer the questions that Fuller answered as they
pertain to the center in Indiana?  Thanks.

                                     Sharon and Don from PA

I saw your message to me on my email and just decided to reply hear.
This is pretty exciting isn't it? I hope it just catches fire.

I "know" the rest of the members here, either have actually met them
or emailed or spoken briefly by phone.

My now 59 year old husband finsished his proton treatment in Loma
Linda two weeks short of a year ago. At diagnosis PSA was 5.9, by the
time he started treatment a couple of months later it was down to
4.9. Stage T1c, Gleason 3+3 with 2/12 cores positive. Gregg was
diagnosed with non-invasive bladder cancer just 15 months prior to
his prostate cancer diagnosis.

We took surgery off the table really early on, especially when we
found out that the succes rate for surgery is no better than anything
else.
We were convinced that more normal tissue would be spared with
protons and were especially concerned with sparing Gregg's bladder as
much as possible.

We are Kaiser members. Kaiser will not pay for protons. We took the
appeal process all the way to the agency within the state of CA which
oversees HMO's. The state upheld Kaiser's denial. We currently have a
lawyer who is trying to get Kaiser to reimburse us. We are not
holding our breath.

So, that's our story in a nutshell.

Very nice to meet you and look forward to talking to you more.

Laurel

Thank you for all your hard work and information,  Don

 

 

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

From: protoninfo

To: protoninfo@yahoogroups.com

Sent: Saturday, March 01, 2008 4:18 PM

Subject: [protoninfo] Miscellaneous Thoughts

With this posting, I am starting a non-scheduled regular series of "Miscellaneous Thoughts" that have occurred to me at various times. They will be in no particular order, and if I forget , may sometimes even be repeated.  If so please forgive me. At least as the list gets longer, the old messages will be "long gone" and you won't see them unless you scroll back.

This first one is appropriate given the discussion of the various proton centers.

The other Centers of Excellence that now provide Proton Beam Radiation Therapy may be in the early stages of developing their own variations of the treatment planning and procedures, but this is as it should be. The basic requirements have been established and approved, and all must adhere to them until improvements are established by proper clinical trials, approved, and implemented. The more experience that is brought to bear on the treatment itself and the more that the treatment ! is used and made known, the sooner these improvements, which are inevitable, will occur.

Fuller

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

From: protoninfo

To: protoninfo@yahoogroups.com

Sent: Saturday, March 01, 2008 4:18 PM

Subject: [protoninfo] Miscellaneous Thoughts

With this posting, I am starting a non-scheduled regular series of "Miscellaneous Thoughts" that have occurred to me at various times. They will be in no particular order, and if I forget , may sometimes even be repeated.  If so please forgive me. At least as the list gets longer, the old messages will be "long gone" and you won't see them unless you scroll back.

This first one is appropriate given the discussion of the various proton centers.

The other Centers of Excellence that now provide Proton Beam Radiation Therapy may be in the early stages of developing their own variations of the treatment planning and procedures, but this is as it should be. The basic requirements have been established and approved, and all must adhere to them until improvements are established by proper clinical trials, approved, and implemented. The more experience that is brought to bear on the treatment itself and the more that the treatment ! is used and made known, the sooner these improvements, which are inevitable, will occur.

Fuller

Rick,

Thanks for being the "first" poster here. I am very glad to have
(coincidentally) just made your acquaintance.
Please provide your "stats" (when dx, PSA's Gleason Score, where/when
treated, etc.) As you know, these things are all important and even
though I hope that all will visit your Blog, I hope that all will
provide this basic info here.

Best regards.

Fuller

Error Correction

The University of Florida Proton Institute at Jacksonville; the link
should be:

http://www.floridaproton.org/

(Somehow I left a space in the original posting.)

I will provide a listing of "Links" to be accessed at the left side of
the page at a later date.


--- In protoninfo@yahoogroups.com, "protoninfo" <protoninfo@...> wrote:
>
> General information on Status of facilities offering Proton Beam
> Therapy for prostate cancer:
>
> Loma Linda University Medical Center is inundated with applications.
> The only thing that I can suggest is to call the Proton Center at
> 1-800 776-8667 at 0800 Pacific time and ask for an appointment for
> consult. I am told that treatment starts are running from two to three
> months behind, but others have said the actual backlog is much more. I
> suppose one can hope for a cancellation.
>
> Florida Proton Center at Jacksonville http://www.floridap roton.org/
> is taking applications for consults as of now. All three gantries
>  ...

Recommendations for the "Newly Diagnosed" Prostate Cancer Patient

1.  Do Not Panic! Many of us have been down this road before, and
there is much to learn before you choose the solution "best for you."
You have had this thing longer than you think, and taking the time to
do the proper investigation into your options will not hurt.  Since
you have posted on the Internet, you obviously have the means to do
most of the research that you need to do. There is a wealth of
knowledge and experience for you to draw on.

2.  Do Not Accept the First Recommendation From the Urologist!  (Or
any other "first" recommendation) Get second, (or more) opinions from
experts in other specialties. Depending on your Gleason score, you
have time to figure this thing out! Gleason of 6 or less, take your
time and be thorough; Gleason 7 and up, you need to do something
sooner than later, but remember that it "is not going to kill you
tomorrow," so you still have time to do a good job of fact gathering.
Your PSA value enters into this equation also. This is the time to
learn and thoroughly examine ALL your options, because whatever you
choose, you will live with the consequences the rest of your days.

3. I recommend that you also join "YANA" (You Are Not Alone")
http://www.yananow.net/   Explore it. (My story is on YANA, under
Mentor Experiences/Proton Beam). Study this site carefully; the author,
Terry Herbert, is "One of Us."

4. Consider Proton Beam Radiation Therapy (PBRT), which is only
available at five "Centers of Excellence" in the U. S. This is the
ONLY treatment (other than "Watchful Waiting" which of course has no
side effects) that has the least amount of side effects, with at least
comparable results to all other options.  Usually you will not hear of
this option from other doctors or specialists!

Do not allow the fact that the doctor did not mention it prevent you
from considering this option along with the others! At the very least,
study the records about PBRT and if possible, visit one of the centers
for a consultation.

Disadvantages:
Nine weeks at one of only five centers that offer it.
High cost (Medicare and most insurance does cover it).

Full disclosure: I believe that PBRT results in the best chance for
improved "Quality of Life" during and following treatment, and
consider myself a "Proton Beam Advocate!"
  I completed my PBRT in March of 2007.

5.  Get Bob Marckini's book, "You Can Beat Prostate Cancer …" and read
it cover to cover BEFORE you visit your doctor again if possible.
There is a wealth of information in this book!
Order from Amazon or from Bob at www.protonbob.com.
Reading this book is probably the most important recommendation in
this list!!!

6.  Go here: and read Aubrey Pilgrims work:
http://www.cancer.prostate-help.org/capilgr.htm


Whatever method you choose for your treatment, you should be
comfortable with it.  Be happy that you made the choice, based on your
personal situation. This is many times better than accepting the
recommendation of the diagnosing specialist, then later wondering why
you did not do your "due diligence" and make your own decision!
Whatever method you choose, rest assured that the outcome, with
experienced surgeons or other specialists, is approximately the same
for most modalities. The major differences in the outcomes may be in
"quality of life" issues, which may or may not happen in every case.
For me, these were the main drivers in my decision to receive proton
beam therapy.

Feel free to join this group. and ask for any additional information
about proton beam therapy.

The answer,given by the man who is in charge of maintenance of all LLUMC proton systems,was that the present system is vastly improved over the original system, and when there are improvements that need to be incorporated, planned sequential shutdowns are done so that the work can be accomplished. This is in addition tothe planned maintenance (the system is normally shut down on weekends). We witnessed such a repair during the tour. A large water pump, part of the cooling system, was being replaced.

General information on Status of facilities offering Proton Beam
Therapy for prostate cancer:

Loma Linda University Medical Center is inundated with applications.
The only thing that I can suggest is to call the Proton Center at
1-800 776-8667 at 0800 Pacific time and ask for an appointment for
consult. I am told that treatment starts are running from two to three
months behind, but others have said the actual backlog is much more. I
suppose one can hope for a cancellation.

Florida Proton Center at Jacksonville http://www.floridap roton.org/
is taking applications for consults as of now. All three gantries
are up and running, and the number of applications is increasing.
Self referral is possible. They will accept patients with more
aggressive disease, Gleason 8-9, but will use more aggressive protocols
such as chemo and ADT in conjunction with proton therapy.

MPRI - Midwest Proton Radiotherapy Institute, at University of
Indiana, Bloomington Indiana     http://www.mpri.org/
is accepting new applications. Another friend has a consult
scheduled next Weds. The center has a fixed beam room and two
rotating gantries, so patient throughput is not as large as the
others (except MGH). Again you can be "self referred" to the best of
my knowledge.

M. D. Anderson Proton Center at Houston, TX
http://www.mdanderson.org/care_centers/radiationonco/ptc/
Is also accepting applications for consults. I don't have a lot of
info about status, but they do have three rotating gantries, so a
large number of patients can be accomodated. They will not accept
patients with Gleason above 7 (my experience in late 2006). Don't
know if this policy has now changed.

Mass. General Hospital at Boston is discouraging proton treatment of
prostate cancer in favor of a sponsored IMRT facility. They only have
two gantries, and apparently the increasing number of prostate cancer
applications was such that they could not accommodate the various
other critical cancer cases. Since IMRT results are about the same
(discounting potential side effects- my opinion) they elected to
treat the other cancers as higher priority. This is perfectly fine,
and I do not fault them for this, especially the children with
critical need for proton treatment.

To join this group, just click on the blue "Join This Group!" Button at
the top right when you reach the home page. I will attempt to approve
new members as quickly as possible, but please recognize that I may be
"off-line" at times. Your patience will be appreciated.

Fuller

Hi Folks:

I have absolutely no idea how this is going to work out, but if I
don't try, I won't know, and as my granddaddy used to say:"If you
don't ask, you don't get!

So I am asking for you indulgence until I get the hang of this, and
asking for all to fire away with questions about proton radiation
therapy.  I will attempt to answer with what I do know and am still
learning about protons and prostate cancer. Others who join may be
much more knowledgeable, and their inputs are certainly appreciated.

I do NOT claim to be an expert, but I have compiled some information.
Information on proton therapy is sadly lacking, so perhaps this forum
may fill some gaps.

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Disclaimer:

As the "List Owner" and originator, I wish to make known my
"credentials" or lack thereof. I am a retired engineer, not a medical
doctor, and all information, comments, and/or advice in this forum by
me represent my personal experiences and opinions only. This is a
rapidly evolving and changing technology at this point because of the
new facilities planned and under construction. Some information
provided here may be incorrect and/or obsolete.  All information
should be verified before acting on it. This includes information
provided by members who post here.

Any decision to utilize Proton Beam Therapy for treatment of cancer or
any other medical condition should be made in conjunction with
qualified professional physicians and/or radiation oncologists.
Please recognize that this list should used by individuals while
searching for and deciding on a treatment for his or her own
particular condition and situation. A patient should use all the
research facts that he has found along with his best judgment on how
the treatment selected will likely affect his own priorities and
especially his quality of life, in making treatment decisions.
All factors involved in the decision process should be discussed not
only with the patient's medical doctors, oncologists, or other
professional medical specialists, but with close family members, loved
ones, or friends as well.
-------------------------------------------------------------

Here are my "stats:"

Fuller Jones, Retired Engineer with the Space Program. My wife of 54
years and I reside in Florida.
White male, age 74, weight 185, height 5 ft. 10 in.
Diagnosed with PCa August 2006, after PSA increased from 4.0 to 5.0 in
less than one year. Gleason Score initially 4+4=8. This was later
changed to 4+3=7, with some evidence of perineural invasion, by Dr.
Jonathan Epstein of Johns Hopkins. Due to an enlarged prostate gland,
and to "control" the cancer, I was given a four-month Lupron shot on
August 11, 2006 (in preparation of the initial recommendation for
cryotherapy).
Following an agonizing two months of study and searching, I "found"
proton beam therapy. In consultation with five different specialists,
not one had even mentioned protons.
I began my treatment at Loma Linda University Medical Center in Loma
Linda CA on January 4, 2007, and completed my forty-four "doses" of
protons March 8, 2007. The Lupron had reduced the size of my gland and
reduced my PSA to 0.25 ng/ml at the time of treatment start. Total
radiation was 79.2 Gy, given in the forty-four fractions of 1.8 Gy
each, five days a week until completion.
Current PSA is less than 0.1 ng/ml almost one year from completion.

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To post on this list, you must join. Some known interested parties
have been invited to join, but the list is open to anyone, especially
those interested in proton therapy for the treatment of cancer.  Some
information here may be helpful to anyone in the dire straits of
trying to decide on a method of treatment.

Rules:
No spam, no "flaming," no foul language, or your membership will be
terminated.
With that, I will conclude this introduction to this list.

Fuller