Robert
Parsons and his wife Deborah live in Michigan, USA. Robert was 51 when he was
diagnosed in March 2002. His initial PSA was 46 ng/ml and his Gleason Score was
9. He decided on Intensity Modulated Radiation Treatment with both Photons and
Neutrons. Here is his story:
My
diagnosis came from total urinary blockage which sent me to a urologist for testings.
The DRE was positive and the high first psa test (46 ng/ml), lead to biopsies
and ultrasound testing. 3-types of Gleason Scores were found on both sides of
gland in roughly equal volumes. All twelve biopsy needles were positive with a
with high percentage volume in those cores.
I
had bone and CT scans which were found clear and signed off by radiologist (but...scans
are not 100% definitive until enough PCa cells become present. Maybe around 1-billion
cells are required). I proceeded to get opinions on treatments, Doctor 'A'(a
surgeon) said curative surgery with 1% chance of incontinence; Doctor 'B' (another
surgeon) said, "No way. I will not do surgery on you." (THIS IS WHY
YOU NEED MORE THAN ONE OPINION).
I
found out that Doctor 'B' was more correct, based on my statistics and went on
to seek further opinions. I interviewed radiologists, oncologists, urologists;
I talked to centers of excellence like Radio Therapy Clinics of Georgia and Dr
Dattoli. In the unreal process of seeing so many doctors, I fired one radiologist
and an oncologist (it is your life choose wisely), and after seeking about
eight opinions narrowed it down to two radiologists and proceeded with Intensity
Modulated Radiation Treatment.
I
started Androgen Deprivation Therapy (hormone therapy) at onset of treatment.
I am still continuing this treatment, although I have added components and now
am on an ADT3+ regimen (Lupron plus Casodex plus Proscar - Zoladex is same as
Lupron).
I
am now 13 months post IMRT and it is 22 months since my diagnosis. My nadir PSA
in 2003 was 0.06 ng/ml and my current PSA is O.69 ng/ml. If someone wants information
on hormone therapy and effects or radiation protocols I have some input on them.
I also looked into robotic-laproscopic surgery and talked with patients that were
pleased with process. I believe that there is a place for every treatment or non-treatment
and that is why they exist in many forms. My insurance did pay for it all, I liked
that experience:-)
Just
recently March 2004 I decided upon the pre-treatment for possible gynecomasia,
male breast enlargement that could occur while using certain drugs: DES or estrogen
patches, casodex and there equivalents of course. Since I am doing DES 1mg. and
casodex (either 50 or 100 mg), my odds for this are increased and so this is the
treatment:
You
can have your breasts radiated to stop enlargement, however it has to be before
the enlargement is happening, otherwise it cannot reverse it or stop what is there
already. I was doing these two drugs for less than 30 days and gyne... was not
found by the doctor. So, proceeded to do this. Normally, most radiation/onco doctors
will do this in 3-sessions totaling 12 gy (12 grey scale, 1200 rads, probably
4 gy per session).
I
got 10 gy in one session all at once, 3.5 minutes of exposure per "boob" with
'electron rays' they can control depth and power levels within it and this is
why it is used, it will not hit your heart or lungs as is will not go that deep.
It is simple and similar to a sunburn perhaps on the end of the breasts. As crazy
as PCa issues are, I chose to have the laughs by doing this now, otherwise the
laughs coming are much harder to tolerate. I told someone else that with PCa issues
you might have to have your breasts radiated to prevent growth, it has to make
you wonder how fictional is this story.
Neutrond-electron
Bob as usual PCa issues can be stranger than fiction, but I'm laughing too.
Rob's
current PSA is 0.50 ng/ml and he is now using only DES (diethylstilbestrol) and
trying intermittent use. Here's his update:
It will be 3 years since diagnosis in 2002-March/April with ominous original stats.
I did hormone therapies ADT, ADT2, ADT3 but dropped them all about 11 months ago
and started DES 1-mg. I wanted to get away from the side effects and know Lupron
was a cash cow for the doc and manufacturers of it (bye-bye).
I
will say that I am glad I made the move to DES and have found no side effects
to deal with as I handled the two biggies up front: blood thinner is recommended
with useage so I take coumadin (warfarin)- not a big deal - and to prevent breast
enlargement I decided upon the light duty radiation protocol to limit and stop
that from happening...I did work fine and no big side effects.
The
drug has outperformed the ADT3 some, as it lowered my PSA and stabilized it even
though I never got higher than 0.90 ng/ml post treatment radiations. I even stopped
having hot flashes when Lupron was still in me. As soon as you start DES it cancels
hot flashes and you do not have them with this drug (amen). I feel stronger
than previously on the ADT regime.
I
have recently conversed with Dr.
Fernando Premoli of Argentina who uses estrogen patches on his patients and
none have had blood clots or DVT's. He knows my case and mentioned that I could
do intermittent useage, because my PSA has been pretty stable for a year using
this drug.
I
already started the intermittent useage via stopping on January 23rd and will
monitor PSA soon. I got a fPSA test recently. It was 20%, not great but whatever.
My other tests like PAP and Pyrilinks both were excellent and had one register
zero (forgot which test now) and the other in safe ranges.
I
am excited and pleased at trying the intermittent as my original diagnosis lead
me to believe I might not be here this long. Still living in limbo land, you don't
know where you stand for certain, but can at least hope and be pleased at the
current status. I have no regrets for any of the treatments I chose, I did find
it appalling that I had to fire a few doctorss who's profits and agendas were
the #1 priority for them. I even got lied to by them more than once, so "caveat
emptor" applies.
If
anyone wants to know where to buy DES, they will even ship it to anywhere, I could
give you the locations I know of approx. (4) of them. Best to you all, we all
have to make choices on this and none of them appear beautiful.
June
12, 2005 have been on DES 1-mg. for approx. 15 months and pleased with no hot-flashes
and bone density issues being a plus with DES vs. dimished via LHRH drugs (Lupron
etc.). PSA test about 2 months ago was 0.37 ng/ml, the lowest I had in a year
or more. New test now is 0.66 ng/ml and I have seen it vary back and forth so
have not alarmed just yet. Radiation treatment went well and side effects little
to none.
Originally my uro-doc told me that basically I could try 'all' modalties like
combined to fight the disease, but was not hopeful for anything. My stats were
ominous and higher end of average diagnosed men. Looked into surgery and found
it would be for nothing most likely via: many opinions, forums, partin tables,
nomograms and such.
Decided
upon ADT(3) adjuvant 5 months, then radiations at Karmanos by Doctor Jeff Forman
leader in Neutron then Photon Ray useage (2-machines used). Figured it was my
best shot at either possible cure or best treatment I could get. Brachy seeds
did not look good in my case, would have needed to many and complications thereof
looked very real.
Don't
regret treatments and dropped ADT and went to DES back in Feb. 2004 and it has
worked well and out performed the ADT, levels I had of PSA declined and stabilized
pretty much. Hoping that something better will be available to control or cure
the disease in the near future (as it is overdue anyway). I tried to be helpful
to others as I had very little help when I needed guidance and understand what
it might mean. I probably got a little over zealous at times and spoke a little
to bluntly at times and apologize to any of those who where offended. It is not
easy doing 3 years or more of hormone therapies without it getting to you in one
way or another.
If
find it most ironic that DES for $120 per year is outperforming ADT3 which is
like $13,000 per year, I saved Blue Cross thousands and yet no thank note to date
(ha).
That
my update for now.
Decided
to go off of DES and other drugs completely, at this juncture and see if it is
necessary to get back on them (does PSA rise or symptoms show up???). Could be
a dumb move or could be wise too. We shall see at some future time perhaps. I
am a very independent thinking person and have learned not to trust the 'norm'
establishment, that would probably have me taking Lupron for life at $8,400 billed
per year.
The
DES was not a problem and worked better than Lupron, Casodex etc. I would prefer
to not take anything, especially if in the longer run it makes no real difference,
then why take anything. Not saying for others to follow what choices I might make,
either.
It
has been over 4 years since diagnosis now and glad to see things have gone pretty
well, considering where I started in stats.
Rob
is now 56 and his current PSA is 0.73 ng/ml. Here's what he was to say:
Well
have gone off all drugs for quite some time now and thus far has been a blessing,
no side effects any more. My onco-Doc is pleasantly amazed at how I am doing,
based upon my original stats and current standings.
My
testosterone is in the normal range now for about one year and yet PSA numbers
have not gone up to any significant amount, as of yet. All my markers and numbers
currently and for couple years have been normal and safe looking. My blood pressure
was 102 over 62 yesterday [30 April 2007] which is real nice looking and usually
is around that range. Feeling real good and thus far a happy camper.
My
personal belief is many patients are over treated for surgery or other first response
to hearing you have cancer. Some people should monitor and do watchful waiting
(depending upon stats and nomograms), some people should consider looking at Dr.
Leibowitz concept of ADT3 drugs for 13 months, quit and monitor using only Proscar
or Avodart. One man did this and it has been 10 years approximately: no cancer
found on 2 re-biopsies, PSA is normal and best of all he is totally normal as
a man still. So, is he stupid? He can still get first line treatments if ever
necessary.
I
am a witness to using diethylstilboestrol (DES) and found it way better than Lupron-Zoladex
and such as to performance (PSA numbers) and side effects. Not to mention it costs
me only $100 per year vs. billings of Lupron at $8400. Smell any bias in marketing
and profits along the line??? .
Well
here is it August 3, 2008 and so far so good. I take no drugs for PCa and do not
take supplements and eat most whatever I want, but I try to keep (red) meats to
a lower useage. My blood pressure numbers have been excellent throughout and my
tests show all numbers within normal limits and includes a normal testosterone
range. So far PSA numbers have stayed the same for quite a while or even went
down a very small amount. I need to get tested again and may go today to a walkin
basis offered by a local hospital for $15 and results mailed to you and your doc
(love that option - 'at your convenience').
To
the newbies with PCa I suggest you get the book: A Primer on Prostate Cancer-
The Empowered Patients Guide.( The ISBN number is 0-9658777-6-0
and it has been available at Amazon and Barnes & Noble as well as at the Life
Extension Foundation site, whose support saw the book published.)
It has the most information and coverage on PCa I have seen and is meant
for patient reading.
I
do not claim to be cured by any means so in case you thought such. I am enjoying
whatever time I am granted during my journey of life. I am playing guitar and
singing with an acoustic group recently and that is a wonderful thing at this
age...doing songs that we loved from the 60-70's and up. Songs like: Sister Golden
Hair (America), Margaritaville, MoonDance (Van Morrison), Hotel California, Sweet
Home Alabama, Ventura Highway and such. This is the fun stuff that I look forward
to and is my passion and hobby. Playing in front of an audience is the next step
in our plans, so we can keep on rockin in the free world (per Neil Young). I hope
I can keep rockin for a number of years and will thank God for gift and talents
brought to each and every one of us. We are all unique in one way or another.
Peace
be with you my brothers.
Well
a minor update that makes my day at this part of the journey.
I
did well on the DES and PSA stabilized near 0.46- 0.7 range for long time, as
an experiment for myself (I have already pressed the envolope on PCa issues),
decided to go off of it and no drugs then and see if PSA rises quickly or not.
I needed to know how effective those early protocols might have been, I took the
risk. Well here are the PSA's that lead me to resume DES:
April 4 08 stable at 0.47 psa (been off DES maybe 2 yrs)
Aug
25 08 rising now at .95 (starting to worry)
Nov
1 08 1.46 psa (doubling time issues)
Re-started
DES around mid-November got new test after short time Nov 26 08 - 0.65 PSA (DES
is working well again-whew after seeing doubling time I had my wonders about response)
Sure, I don't know how long it would be effective, but I will find out.
I
would like to give the finger to my uro-doc whom wanted me on ADT for life (never
would of told me of DES or other choices and didn't), of course at his palace.
He got fired many years ago and with many reasons. I hated the side effects of
LHRH-ADT3 it was rough.
People
can make choices in their quest against fighting PCa, lots of choices and protocols.Today
I am pleased with the results of resuming.
(Hey
if you missed it- I am Mavericky-LOL) .
Rob's
e-mail address is: zufus_2001@yahoo.com.
