 
Fuller
Jones and Carolyn live in Florida, USA . He was 73 when he was diagnosed
on August 10, 2006. His initial PSA was 5.0 ng/ml, his Gleason Score was 8 and
he was staged T2b. He is still undecided as to which treatment will suit him best.
Here is his story:
In early August I was diagnosed, after biopsy, with PC. My wife and I have gone
through what I now know are all the usual stages of this "happening"-- Shock,
dismay, worry, and now the beginning of understanding. I am a white 73 years old
male, in fairly good physical condition (gym 3 times a week), but in 2004 I did
suffer a (minor?) stroke which affected my left peripheral vision only-- no other
physical impairments. I am on Plavix and Pravachol; and Flomax since June.
My
biopsy showed the PC to be mostly on the right lobe, but GS 6, 8, & 6. Only one
core on the left lobe showed positive at GS 6. My PSA went from 2 in 2003 to 3
in 2005, then to 5 in July of this year. I had the CT Scan and Bone Scan which
were negative. Testicular Ultrasound also ok.
I let the local urologist
talk me into Lupron Therapy before doing any investigation myself, and I had the
"Four-Month" shot on August 30, 2006. This Urologist recommended "SeedNet" Cryo
Treatment of the complete prostate. A "Second Opinion" by a Radiologist recommended
Radiation Therapy. Thus I started to realize that I needed to do my own investigation.
Following that I really started my research and finally decided to investigate
cryosurgery was possibly the correct course of action.
I have read the
information of Dr. Gary Onik, among others, whose work led me to the idea that
"focal" cryosurgery may be the right treatment, hopefully to spare the nerves
on the left lobe. I now find that Dr. Onik has "opted out" of Medicare (Medicare
is my Primary Insurance, with Federal Blue Cross-Blue Shield as secondary). I
am located on the East Coast of Florida and hope to find treatment in Florida
if possible.
My primary question is whether or not to go ahead and schedule
a "mapping biopsy" of the left Prostate lobe, (to determine the true extent of
cancer growth with the option of cryo, - sparing the nerves on that side) OR wait
until my Lupron-Four Month therapy shot treatment is near completion. I had it
August 30.
My local Dr. tells me that the Lupron should "run the course"
to shrink my prostate before any treatment, so this is another question, as he
has not been very forthcoming in answering many of my questions. So I also need
an opinion on the question of waiting until the end of December (The end of the
four month Lupron Therapy) to do anything, or should some alternative or concurrent
treatment or diagnostic method be started before then?
I also want to know
more about MRSI (or ProstaScan?) for more definitive knowledge of my PCa, and
if it is available in Florida; if not the nearest state to Florida.
I am
one who likes to understand things before reaching decisions, and feel reasonably
confident in my ability to do so. I am a graduate engineer, retired from the Space
Program.
Since
my initial forum entry, I have done additional research, but still have reached
no definitive decision on the course of treatment. Cryotherapy, Brachytherapy
(with radiation?) and now even the HIFU Therapy are in my thought processes. I
need to know much more before I finally decide, and only have (self imposed deadline)
until December 30, 2006 to decide; that is the end of the 4-month Lupron period.
Almost
six weeks have passed since my Lupron-4Mo. shot, and an interim PSA check was
done on Oct. 04, 2006: result 2.41 ng/ml (was 5.0 when diagnosed). Before the
Lupron shot, the Flomax seemed to be helping with my ability to urinate, but now
I am back to where I was before Flomax: some difficulty, intermittent weak stream,
having to go aboout every hour or so and waking up once or mostly twice at night.
I do not know if this is related to the Lupron or not. The
expected hot flashes arrived with a vengeance, but don't seem to bother me so
much during the day; BUT it DOES bother me that they DO wake me up at least once
at night. I
continue to read and study the information available, especially the experiences
shown on this wonderful site. In particular, I was positively amazed at the experience
of Mr. Bill Lambright (under
the Cryotherapy heading). His search for information was so remarkably like my
own that I thought that I was reading about myself!!! The reading of "A Primer
on Prostate Cancer", the initial information on cryosurgery, the contact with
Dr. Onik with the discovery that he did NOT accept insurance, and the referral
to Dr. Brunelle on Tampa, FL are EXACT parallels to my path so far, and that is
as far as I have gone on this journey. I plan to contact Bill after I finish this
update. I
have an appointment with my first urologist tomorrow, which may be my last with
him unless he demonstrates that he can be more forthcoming and straightforward
with me. I have an appointment the following week with a different urologist to
see if he is willing to work with one who hopes to be "an informed prostate cancer
survivor.". I am now wondering if I really need to be seeing an Oncologist as
well??? That's
all for now, and "may God bless us every one!".
When
I last posted I was still in a state of shock and almost total confusion. Since
then I added three to my list of doctors, and subtracted one! That is where I
left off with my story. Continuing:
I
believe that my indecision in this process was probably the best thing for me,
because I proceeded to read and study everything that I could find about prostate
cancer treatment methods (modalities, as the doctors called them). Even though
I had "jumped" into the decision to go ahead with the hormone treatment
with Lupron, it turned out to allow me the time that I needed to do this study.
I found the wonderful book "A Primer on Prostate Cancer" by
Strum and Pogliano. I recommend this book to anyone, patient
or family member, whose life has been affected by prostate cancer. It is a reference
book, and parts may be difficult to understand, but it is worth the effort. I
am still reading it.
The
first urologist, who shall remain nameless, is no longer my doctor! He was even
more non-forthcoming during my last visit, except to say that the Lupron was working
because my PSA had dropped from 5.0 ng/ml to 2.4 ng/ml. Perhaps he sensed from
my questions that I wanted to become more involved in the decisions that would
ultimately chart the course of my journey, for the rest of my life. It was very
plain that he considered himself to be the doctor and as such my opinions and
questions were not critical or important in so far as the choice of treatment
for my cancer. He had recommended the cryosurgery, which he would do, and that
was it. My final question to him was: "If I went to a center of excellence
for my treatment, either in state or out, would he continue to be my urologist?"
The answer was a definitive "No! I have my own patients to take care of!"
I left his office knowing that I would not be back!!!
I
promptly made another appointment with my primary care physician, during which
I explained the situation, and he gave me a referral to another local urologist
in mid-October. I have an appointment with him to see if he is willing to work
with one who hopes to be "an informed prostate cancer survivor." I continued to
read and study the prostate demon, and felt that I was becoming less confused,
but still in need of more information to make a logical decision that would be
"best" for me. During the next week, while waiting for the next appointment,
I continued my research. One effort entailed simply entering "prostate cancer
treatments" in the Google search engine. The amount of information found
was staggering! I sat down at the computer for hours, determined to read as much
as I could about the various methods, but eliminating cutting surgery for removal
of the prostate gland.
The
more I read, the more that I became aware of the need to carefully consider the
possible side effects and results of the different treatments. I decided that
my number one consideration would be "quality of life" because I just
did not want to be incontinent, nor did I want bowel problems or to be impotent
if it could be avoided. One site in particular brought this home to me: Prostate
Cancer Treatment Guide listed in tabular form all the treatments that I had
been seriously considering, and ALL simply scared me out of my mind! The impotence
and incontinence things were in just about all of them! I became discouraged and
once again almost totally confused.
Nevertheless,
in this particular late night session, I methodically continued down the list
of sites, reading and taking notes as I proceeded. The sixth on the list was Prostate
Cancer Foundation, that I started going through at midnight on this particular
October night (can't remember the date). In reading through the information on
radiation therapy, I found the following: "In some centers, proton-based
therapy is used during IMRT rather than the more traditional photon-based therapy.
Although early studies have shown that oncologists may be able to manipulate these
beams even more precisely, this technology is not yet widely available. Because
the treatment planning with these types [PROTON] of therapy are far more precise,
higher "and more effective" doses of radiation can be used with less
chance of damaging surrounding tissue."
What was this??? This was
the first time, in all that I remembered seeing, or had been told by any doctor,
anything about "proton-based" radiation treatment for prostate cancer.
"Less chance of damaging surrounding tissue"? Suddenly I was wide-awake!
Now I remembered that I had seen something about this Proton thing in the book
"A Primer on Prostate Cancer" that I had not completely read. I went
back and read it, then I immediately Googled "Proton prostate" and there
was a multitude of sites and information!! It was now almost 1 am, but I continued
to read, becoming more excited as I read!
WEBMASTER'S
NOTE: FULLER CLEARLY HADN'T LOOKED TOO CLOSELY AT THE PAGE TREATMENT
CHOICES BECAUSE IF HE HAD DONE SO HE WOULD HAVE FOUND PROTON
BEAM THERAPY NOT TO MENTION THE STORIES OF MEN WHO'VE BEEN THERE AND DONE
THAT ON THE EXPERIENCES
PAGE
The
very first site: Prostate Cancer and
Proton Treatment was entitled "What your Doctor may not know, and might
not be telling you." WOW! Then I read about a medical center that I had never
heard of: "Loma Linda University Medical Center" (LLUMC) in California
that had been using Proton Beam Therapy to treat cancer since the early 1990s!!
And then I read about the other centers in the U.S. using this proton treatment,
including Massachusetts, Indiana, and now Texas and Florida. Loma Linda has now
treated over 11,000 cancer patients with the proton therapy; over half of these
were prostate cancer patients!!!
I urge any newly diagnosed prostate cancer
patients to check this site and the many others listed to decide for themselves
if this treatment should be considered in the decision process. No cutting, freezing,
or "stabbing!" No pain! No radioactive pellets forever in my prostate!
(One wonders how this could be explained to Airline Security Personnel???) Minimal
side effects! No "Recovery Time!" Medicare covers it! Comparable history
for outcome to other treatments! The only drawback was that I would have to travel
2,600 miles to Loma Linda to have my treatment!
I decided to dig into
this in depth. For two weeks I spent most of my time making phone calls to various
centers that offer the Proton Treatment (There are only FIVE in the US), and continuing
to read everything that I could find about it, including literally hundreds of
testimonials from men that had received the treatment, all of whom had received
their therapy at LLUMC!
In
the mean time, (October 16) I met with my NEW urologist, Dr. Ovid Vitas, for an
initial consultation and exam. He was most forthcoming and supportive. I posed
the question about out-of-state treatment up front, (would he remain my urologist)
and he had no problem with it; night and day from the first urologist! His DRE
found the prostate fairly smooth with one harder area (the nodule had apparently
shrunk). He confirmed that the reduction in the PSA from 5.0 ng/ml to 2.41 ng/ml
showed that the Lupron was working. He stated that in his opinion I did not need
Casodex and/or Avodart in conjunction with the Lupron Therapy. He carefully went
over the available treatment options with my wife and I, ruling out surgery. He
did NOT mention Proton Beam Therapy! He recommended Radioactive seeds (Brachytherapy),
which he would do himself. He concluded with the statement that I needed to decide
and to come back in a week and tell him of my decision. I mentioned that there
was a new Jacksonville FL Proton Beam facility, but he apparently did not know
of it, because he thought that it must be associated with the Jacksonville Mayo
Clinic Facility (it is not, it is University of Florida Shands). This I did not
go into with Dr. Vitas. He did not seem to want to talk any further about Proton
Beam, so I dropped it.
On
October 20, 2006, about three weeks after I "discovered" the Proton
Beam, my decision was made! I sent my records to LLUMC in hopes of getting an
appointment with Dr. Carl Rossi at Loma Linda for a consultation and Proton Beam
treatment. I also sent a fax to Dianon Labs, (biopsy report) asking them to send
my slides to Dr. Epstein at Johns Hopkins for a second opinion reading. (The slides
were sent out Oct. 25) Tuesday, October 24, 2006: Follow up with Dr. Vitas, my
new urologist. This was a most surprising and interesting meeting, although very
brief. I sat in his office, and asked a few questions regarding the Lupron that
he answered. Then I told him that I had decided to try for Proton Beam Therapy
at Loma Linda University in California.
His
immediate response, no hesitation, was "Good for you!" I had prepared
some data on PBT and Loma Linda, and gave it to him, which he thanked me for,
he then reached over and shook my hand, and said to be sure to have all results
and records sent to him! On the way out of the office, he put his hand on my shoulder
and said: "Enjoy your stay in Loma Linda, it is very beautiful; I have been
there!" I was totally shocked, but looking back, I realize now that he obviously
knew of the Loma Linda Proton Beam Therapy; he no doubt had been there for some
reason, perhaps a symposium. This is just another example of the fact that a patient
MUST do his own research and reach his own decisions.
Wednesday,
October 25, 2006: I received the phone call from Loma Linda University Medical
Center! My records had been received, and Dr. Carl J. Rossi had reviewed them.
I was accepted for a consultation. We made the appointment for 9 a.m. December
26, 2006 almost exactly four months since my diagnosis; the treatment will commence
in early January 2007, and will consist of one treatment a day, five days a week,
for about nine weeks, completing in mid-February 2007.
Thursday,
October 26: LLUMC Fed-Ex'd a package with housing, a tape, and other information,
which we received Oct. 26. We consulted the housing list; picked out a small house
to rent, called and confirmed it. It will be available when we get to California;
the patient there is just finishing up his treatments then! It is just three blocks
from LLUMC; I will WALK to my treatments!
Tuesday,
October 31: Received Johns Hopkins Report from Dr. Epstein: Highest GS was 7 (NOT
8) !! However there was a notation: One sample had evidence of Perineural Invasion.
I have read what I could of this, and sent Dr. Rossi a message asking him to clarify
what this might mean in terms of my treatment. From what I have read it may not
mean much.
SO! My wife and I are much relieved now that a decision has
been reached. We are actively planning our western trip; we will drive, stopping
at Carlsbad Caverns and several other sites that we have not visited, as well
as visiting some relatives we have not seen in years. This is our "RADIATION
VACATION!" We are determined to enjoy it and get on with our lives!
I
will update again after I get to California!!
I
will try to keep this update more concise.
First
let me apologize for not updating while I was in Loma Linda CA receiving my treatment.
I should have, but the three months went by really fast!
Also let me apologize
if anyone tried to email me at the cnsjones@bellsouth.net e-mail address and did
not reach me; my BellSouth did not work in California.
My PSA is now less
than 0.10 ng/ml; down from 5.0 in July after the diagnosis. However I did have
a four month Lupron shot in August, so my true PSA will probably not be revealed
until my next PSA check in three months.
To any that are still trying to
make a decision on a treatment let me say that you MUST consider Proton Beam Therapy!
My experience was better than I even dreamed of!
Loma Linda University
Medical Center (LLUMC) is one of the finest hospitals in the world! Check it out!
But there are now four other Proton Centers in the U. S. and more on the way.
I have a "White Paper" on the current
status of Proton Beam Therapy and am happy to share with anyone, just email me
at cnsjones@yahoo.com.
My final
decision was based on reading literally hundreds of testimonials on the "Proton
BoB" Web Site, and then doing additional research, speaking directly with
six men who had had the treatment at times varying from 7 years ago to 1 year
ago, and having my final questions answered by three of them, one a medical doctor,
another a radiologist, and the final one was Bob Marckini, a retired engineer.
(Read his book!) I have personally met and also talked with Bob many times on
the phone, and he was the final factor in my decision to go with Proton Beam Therapy.
My
personal research found Protons, NO doctors will tell you about it, at least none
of the six that I consulted did! In my opinion, Radical Prostatectomy as a treatment
will cease to exist within ten years! Certainly it should no longer be called
"The Gold Standard!" I believe that Proton Beam Therapy will replace it as the
treatment of choice regardless of age of the patient, so long as the cancer has
not metastasized, and even then it may help depending on the extent. While I was
there, there were three men at LLUMC for "salvage" Proton treatment that had Radical
Prostatectomies and the cancer was back!
The treatments were "a piece
of cake!" I was fortunate to get an early time (7:30 am) and the set up was about
20-25 minutes, then the treatment itself was from 2 to 3 minutes! I was as free
as a bird for the rest of the day, and weekends were totally mine since no treatments
on Saturday or Sunday. I walked the three blocks to the hospital each day for
my treatment. We worked out three or four times a week at the fabulous "Drayson
Center" (a world class fitness center complete with swimming pool, handball courts,
and indoor track!)Free to patients! We went to Lake Arrowhead, Big Bear, Edwards
AFB (NASA Dryden)and generally enjoyed eating out a lot and relaxing.
During
the ten weeks that I was going through my treatments, I attended every Wednesday
night Education/Support Group meeting, which usually had from 80 to 100 patients
and their wives or caregivers attending. Usually about 8 or 10 were "newbies"
just starting, and about the same were "graduates" finishing up; but there were
usually at least 2 or 3 "Alumni" who were back after completing treatments (some
for their follow up visits, others just enjoying the California winter and visiting),
some as long as 10 years ago. [You do NOT have to return there for your follow
up checks, your local urologist or oncologist can do them.] Incidentally Loma
Linda has now treated over 12,000 cancer patients, and over 65% were prostate
cancer victims.
ALL these alumni were unanimous in their praise of the
treatments and the Loma Linda Hospital, and ALL were experiencing good health,
no indications of prostate cancer (extremely low PSA), and NONE had experienced
any serious side effects from the Proton radiation.
In my case, the only
thing that I experienced was some fatigue in the afternoons starting about half-way
through the process, and three inch diameter "sun-burn" circles on my hips (both
sides) that developed toward the end of my treatments and are now fading. Even
these did not hurt, just pink skin. The doctors tell you that you may develop
a SLIGHT rectal bleeding after about three months while the delicate wall tissues
that did receive some of the protons go through a healing regeneration. A few
of the alumni said that they had this experience, and it only lasted a short while.
So far I have not experienced this, but my treatments were only completed on March
8th.
Each of us must make up our own mind which treatment is best for
US as an individual. Careful study will probably show you that ALL the "modalities"
will yield at least similar chances of "cures." [But PLEASE do NOT consider surgery!!!]
RP is MAJOR surgery with the ever present risk of many terrible side effects and
even death!
With God's help we hope to make the correct decision. In my
case it ended up down to the simple question: "Which treatment is most likely
to provide the Quality of Life that I want for the rest of my years on God's earth?"
I had no desire to risk being incontinent, have a ruptured colon, or have the
possibility of "migrating" radioactive seeds. In the end, it became almost a no-brainer,
and I thank God that I was able to find "The Beam!"
Incidentally, (after
I asked) I had doctors tell me that the treatment was "too new" to have a history;
that it was "experimental" and that the treatment would "cause just as many problems
as other forms of radiation" treatments. These statements are all FALSE! Medicare
pays for PBT, and Medicare will NOT pay for experimental treatments; in my case
Medicare is paying for about 80% and BC/BS is paying the rest.
The
treatment has been used in the US in a hospital setting since 1990 (at LLUMC);
and there are few to no side effects compared to ANY other x-ray or photon radiation.
Again, NONE of the doctors that I consulted even mentioned Proton Beam Therapy
as a treatment option! In my opinion, this is going to change rapidly as new Proton
Centers are built.
Call me or email me if you want any further information.
I am "A Proton Beam Advocate!"
As
of this date, I am having ZERO side effects from the protons. No urinary problems,
no rectal bleeding, no NOTHING! Still experiencing some side effects of the Lupron,
although these are now lessening, and my sexual capability, lost due to the chemical
castration, is slowly returning! I
had my first post-treatment PSA August 9, 2007, five months after completing Proton
treatment, and six and one-half months after my last Lupron one-month shot. The
PSA was 0.17 ng/ml. At first glance this appears to be very good, and it may end
up being so. However, to me it indicates that I am still, about five months after
the Lupron, experiencing the effects of the ADT (Androgen Deprivation Therapy),
since I have read that it may take twice as long as the total ADT treatment to
recover from the effects of this powerful drug. This means that my PSA is most
likely still low due to the ADT, and that I will probably NOT get a reasonably
correct PSA reading until after December 2007, about ten months after cessation
of the five months of ADT. In my mind I am "cured," but I know that I will play
this PSA game every 3 or 4 months until I can determine a trend, and then for
the rest of my days as required.
The general experience for post-Proton treatment WITHOUT ADT seems to be a gradual
reduction in PSA levels starting at about one-half the pre-treatment level five
or six months after completing the protons. So with the ADT still in my system,
I do not know what to expect. If there are others out there that have experience
with the post-treatment PSA levels with the ADT administered, please let me know.
I have "accepted" this as a reality, and do not intend to worry about it, but
would like to find additional data. I
will have my PSA rechecked in December 2007, and will update then if nothing new
occurs. Saturday,
December 1, 2007: It has now been almost nine months since I completed my proton
beam treatment at Loma Linda. I received the results of my last PSA check yesterday.
The trend is still down, so it appears that in spite of my fears that Lupron (last
one month shot Jan. '07), was making my PSA "artificially" lower, the proton treatment
is still in the process of killing off cancer cells. PSA 0.08 ng/ml, down from
0.17 in August 2007. I
remain in good health, getting about 4 or 5 hours of exercise each week (3 hours
at the gym, the rest walking or bike riding), and attempting to be more diligent
in good dietary habits. I have not been able to completely elimiate red meat,
nor coffe, but I have cut back. I am still about 5 to 8 pounds overweight at 185.
My libido is still low, but with some encouragement, I am "functional." At 74,
I presume this is normal, especially after the ADT. Still
no side efects from the protons. No rectal bleeding, no difficulty in urinating,
and sleeping my normal 6 or 7 hours without having to get up. If not for the decreasing
PSA, I would not know that I have been treated for PCa. I
will report again after my one-year mark.
Fuller
C. "Sonny" Jones March
2008: It is hard to believe that a year has passed since I completed proton
beam therapy at LLUMC (Loma Linda University Medical Center). I remain "as if
prostate cancer never happened", except for a reduction in libido. I attribute
that to the five months of ADT (Lupron) that I had, plus just "gittin older" (74).
My
PSA in early March was 0.073 ng/ml (was 0.077 in December). Knowing that PSAs
can vary greatly, I am amazed at these numbers. But I will take them! The doctor
orders what is called "Third Generation" or Diagnostic lab results, and I suppose
that is why they are to three decimal places. I have now graduated to six month
intervals for my PSA tests, so another will be in September 2008. New
proton facilities will be coming on-line in the next few years (University of
Pennsylvania at Philadelphia and Hampton University in Virginia are two such).
In spite of the proliferation of new centers, the mainstream media and medical
profession still do not mention proton beam therapy as an option for prostate
cancer treatment. On
March 25, 2008, the Florida Today newspaper ran an Associated Press article detailing
the side effects of treatment for prostate cancer that did not mention proton
beam therapy, but did mention most other treatments with the potential serious
side effects from them. These side effects are generally not experienced with
proton beam therapy. It remains for the newly diagnosed prostate cancer patient
to "find" proton beam therapy for himself. His doctor is not likely to inform
him of the option. I
have started a new Yahoo Health Group to help others with information about proton
beam therapy for prostate cancer. Please visit and join this informative
forum, where your questions about the treatment and availability are welcome.
I
have also written a book about my
experiences in dealing with the diagnosis of PCa, "finding" protons, and receiving
proton therapy at Loma Linda University Medical Center. I
will post another update after September 2008. As
some here know, when I was diagnosed my initial Gleason Score was reported to
be 4+4=8, with PSA of 5.0. Pretty aggressive. I had a second opinion on the biopsy
by Dr. Epstein at Johns Hopkins, and the results were 4+3=7 - still fairly aggressive.
At the time I knew nothing. My first uro wanted to do cryo, and because my prostate
gland was about twice normal size he wanted to shrink it with Lupron (four month
shot). This turned out to give me time to learn, and to find proton therapy. While
at Loma Linda, my doctor (Rossi) indicated that there was "some evidence" that
a combination of ADT and proton therapy yielded somewhat better "long-term results,"
and he wanted me to receive two more one-month Lupron shots, so that the Lupron
would be in my system throughout the proton treatments. I
was really having some bad side effects from the Lupron, and resisted this. I
wanted to begin the recovery from the Lupron, which I knew would take a long time.
Finally I relented and went with one more shot, which was administered January
22, 2007. This essentially carried me through the protons, which completed March
8, 2007. The
point of all this is that I am now a "believer" in this ADT/proton (or ADT/IMRT)
approach for anyone with Gleason of 7 or 8. While the side effects of the Lupron
or Zolodex (common ADT agents) can be bad for some, you do recover. If I had it
to do over, I would have followed the doc's recommendation to get the additional
one month shot. But it may not have been necessary in my particular case, perhaps
because the one additional shot "carried me through." Why
am I a believer? My
PSA continues to decline! The latest, nineteen months after the last Lupron shot,
and almost 1 1/2 years after protons is 0.050 ng/mL. The
ADT will initially "mask" the true PSA as compared to those that have protons
without ADT (who usually show a decline from the higher level of the original
PSA when diagnosed), but I have been assured by two urologists that by six months
after ADT, it should be gone from my system, and the PSA should be an accurate
reading. So I am feeling pretty good about my PSA! And since my physical just
completed turned up no problems, I am going on with "celebrating life!" And
to those who are wondering if the ADT treatment is worthwhile in combination with
any radiation, I say here is a bit more "evidence" that it is. It
has now been two years and three months since I completed my proton treatment
at Loma Linda. My
latest PSA taken about three weeks ago is 0.05 ng/mL, so my thinking is that I
may have reached "nadir" (low point). I have not yet experienced the "PSA Bounce"
that some have, so we will see. My health is good, and I am able to do physical
work in the yard, which I enjoy except for the heat of summer here in Florida.
I
have had no effects from the protons. I continue be sexually "potent" and over
the last few months have actually improved in sexual capability (for a 76 year
old guy!), so perhaps the effect of Lupron is longer lasting than some doctors
believe or know. (I had a total of five months of Lupron, the last shot in January
2007). For the benefit of those living in the northeast, a brand new proton center
is about to open in Philadelphia, associated with the University
of Pennsylvania. My
"Protoninfo" Group
now has 146 members, consisting of folks from all over the United States and a
few from overseas. They represent men who have received treatment at all five
of the proton facilities in the U. S. Join us if you would like to learn more.
Fuller Fuller's
e-mail address is: cnsjones@yahoo.com
or
feel
free to call him at 321-452-1319 (Florida)
*The
full title of the book is A Primer on Prostate Cancer. The Empowered Patients
Guide. The ISBN number is 0-9658777-6-0. This invaluable book has been available
at Amazon and Barnes & Noble as well as at the Life
Extension Foundation site, whose support saw the book published
[back].
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