Tom
Johnson and Betty live in Florida USA. He was 58 when he was diagnosed
in January 1996. His initial PSA was 110 ng/ml and his initial Gleason Score_was
7(3+4). He was staged D4 and the treatment he chose was ADT (Androgen Deprivation
Therapy). Here is his story:
My Prostate Cancer History
Tom Johnson
In November,
1995, I jumped off a ladder and hurt my back. X-rays by a Chiropractor found that
I had a "mild" compression fracture of the T7 vertebra. After initial treatment
by him did not improve things, he sent me for an MRI. By this time, I could barely
walk, and could not work. The MRI results "strongly suggests metastatic disease
which should be further evaluated by a whole body bone scan". The bone scan showed
hot spots in my bones all over. The tech said I lit up like a Christmas tree.
The Chiropractor sent me to an MD for further treatment. He ran blood
tests and sent me for X-ray cancer screening. The initial diagnosis from the X-rays
was bone cancer and I was scheduled for bone biopsy. However, my blood test results
came back with a PSA of 110 and the MD sent me to a Urologist for prostate biopsy
which resulted in a Gleason score of 7 (3+4). The Uro's dx was metastatic prostate
cancer (not told, but probably stage D4) which had spread to the bones and recommended
either orchiectomy or CHT (combined hormone therapy).
I decided on CHT
and started immediately with monthly Lupron shots, plus daily Flutamide. After
3 months, my PSA had dropped to undetectable (<0.1), most of my back pain had
gone away and a bone scan was relatively clear. However, I had nausea and liver
damage from the Flutamide, so I switched to Casodex after 6 months. I stayed on
CHT for 5 years. I stopped treatment in late 2001, and after a year, my PSA climbed
to 1.5 and basically stayed there until early 2005, when it climbed to 3.4 in
February and then to 15.0 in May. I went back on CHT with Trelstar + Casodex and
my PSA dropped to undetectable again. In May, PSA started to rise (0.9 May, 5.0
July and 18.1 August). I switched from Casodex to Avodart in August. A bone scan
in September showed possible mets predominately in the right pelvic bone.
Except for the cancer, my health is good. Blood pressure is usually on the
low side of normal. By my choice, I take no other meds or supplements. I try to
eat a varied diet with a lot of vegetables and not a lot of meat. I grow as many
of the vegetables as I can. I have a four acre lot here in the Florida panhandle,
and spend a lot of time outdoors taking care of it.
I have been a member
and sometime facilitator of our local Man-to-Man group and think it has been very
helpful to me and to others to share our experiences. I recommend a support group
to anyone who has this disease and encourage the inclusion of spouses in the group.
There has been a lot of discussion of side effects of CHT. In my case, they
have been tolerable.
o Libido - Near total loss of libido, and loss of
ability to ejaculate. It returned during my off-cycle '01-'05
o Weight
- I lost weight (30 pounds from about 220 to 190) during the 6 months I took Flutamide,
but gained it all back plus about 30 pounds in the year after I switched to Casodex,
before I determined I had to watch my diet. Since then, I have maintained the
weight at about 250 pounds, and Im 62.
o Gynomastasia (enlarged breasts)
- They are somewhat enlarged, but never uncomfortable, and never large enough
to be embarrassed about on the beach. Basically, I'm just an overweight guy with
a belly and fat chest.
o Hot Flashes - I experienced them enough to have
to throw covers off at night, and sweat when I shouldn't, but they were never
as bad as those my wife was experiencing at about the same time.
o Memory
- Who can say? Is it age or chemistry? Sure, my memory is not as good as it used
to be, but then I could never remember names, phone numbers or passwords without
help anyway. Just the other day, my wife and I both were trying to tell someone
about a shrub in our yard, and neither of us could remember it, so I said we both
must be affected by the Trelstar. J
o Osteoporosis - My bone density readings
have been consistently on the low side of normal for my age since treatment began.
I take no meds for it.
You can view a chart
of my history online
My prostate cancer timeline is:
Jan 91
PSA 0.91
Sep 91 PSA 0.91 PSA/DRE by Dr. Catalona (St. Louis PSA study)
Nov
94 Normal PSA by Insurance Blood Test
Nov 95 Severe Back Pain did not
respond to treatment
Jan 96 PSA 110.0 - Started Lupron + Flutamide
Mar
96 PSA <0.1
Jun 96 PSA < 0.1 - Switched to Casodex
Aug 98 PSA
<0.1 - Switched to Zoladex
Aug 01 PSA <0.1 - Last Zoladex shot, stopped
Casodex Nov 01
Apr 02 PSA <0.1 -- Testosterone 54
Oct 02 PSA
0.72 -- Testosterone 314
Jan 03 PSA 1.20 -- Testosterone 296
Apr
03 PSA 1.50 -- Testosterone 493
Jul 03 PSA 3.00
Sep 03 PSA 1.70
Apr
04 PSA 1.40
Sep 04 PSA 1.30
Feb 05 PSA 3.40
May 05 PSA
15.3 Started Trelstar + Casodex
Jun 05 PSA 0.4
Aug 05 PSA <0.1
Nov
05 PSA <0.1
Feb 06 PSA <0.1
May 06 PSA 0.9
Aug 06 PSA
5.0 Switched from Casodex to Avodart, had a bone scan
Sep 06 PSA 18.5
Appt. with Oncologist
Oct 06 IMRT for 18 treatments
I
am now a 10 (almost 11) year survivor of metastatic PC. I
started a series of 18 radiation treatments to the pelvic/hip area in early October.
I'll have a new bone scan and PSA about 6 weeks after completion of treatment.
I was also referred to a medical Oncologist who has ordered a CT scan, chest X-ray
and blood work.
I
completed my 18 radiation treatments to my right pelvic bone in early November.
PSA was 6.4 ng/ml and on Nov. 27 was 1.2 ng/ml. Will get results of next PSA on
Jan. 30.
I
recently had my third PSA test results since my last update in January. Tests
on Jan. 22, April 11, and June 6 were all <0.1 or undetectable.
I
am continuing my ADT with once daily Avodart and Trelstar. On my doctor's recommendation,
I switched from 3 month to 1 month Trelstar injections. His reasoning was that
we could monitor my condition more closely with monthly visits and monthly PSA
tests. Also, some of his patients have reported fewer side effects with the more
frequent injections, although I have not noticed any difference.
My
PSA is now almost as high as it was when I was diagnosed - at 96.7.
Since
my last update, my PSA record is:
Nov.
07, .2,
Dec.
07, .7
Jan
08, 2.5,
Feb
08, 5.9 -- at this point, I restarted Casodex on my uro's recommendation to see
if it made a difference.
In
March 08, PSA was 6.3 which seemed to be a reduction caused by the Casodex, but
if it was, it was short lived.
In
April PSA was 16.0. At that time, I was being tested for a possible stroke, and
more concerned about that than the PSA. All tests for stroke or brain tumor were
negative, but last week, my PSA was 96.7.
I
stopped Casodex on the day of the test. I have an appointment with a medical oncologist,
but he won't be able to see me until June 4th. I had my urologist do a new PSA
and complete blood work up, in anticipation of it being needed by the oncologist.
Also, my uro started me on low dose Ketokonozol (LDK) in anticipation of that
action by the oncologist.
I'll
update again as soon as I get more information.
Tom's
e-mail address is: tommie.johnson@gmail.com
