David
Emerson
and
Mary live in Kansas - USA. He was 42 when he was diagnosed on February
18, 2005. His initial PSA was 219.0 ng/ml his Gleason Score was 4+4+8 and he was
staged T4. His choice of treatment was ADT (Androgen Deprivation Therapy) - Hormone.
Here is his story:
I was 41 when the symptoms started, 41! Now, 19 months later I am or have become
hormone refractory. My Oncologist wants me to start Ketaconazole (1200mg daily
and hydrocortisone at 20mg daily). I will continue to take a Lupron injections.
I am going to get a second opinion on Monday to determine if we should just go
right to Chemo? I try to share the experience via my
blog and started a foundation to raise money for research and to help raise
awareness - Faith, Love, Hope, Win Foundation.
I'll
try to post updates frequently.... no offense but most of you could be my dad
or grandfather. It's very strange.....but life goes on, for my wife, for my 10
year old son.
It's
June 2007, 28 months post diagnosis and my PSA is 18.7 ng/ml. While on the surface
this may seem high to some of you for me I rather content with 18. Of course I'd
like the number to be lower, but it is what it is.
Between
May 2006 and September of 2006 my PSA climbed from 11 to 85. I stopped Casodex
in May of 2006 because the number had risen from > 1 in January 2006 to 11. I
am still on 4 month Lupron shots, but started Ketokonizole and Hydrocortisone
in September of 2006. My PSA began to fall immediately and hit a low of 16.25
in May 2007. Bones scans from March 2007 show stability, my spine remains clear,
while my rib, femur and hips show no new activity.
Life
has become a series of 28 day periods, this is the time between PSA tests and
Zometa treatments. The days leading up to and following the test are stressful
for my wife and I, but life goes on. We focus on the three weeks in between.
I
encourage you that are young and newly diagnosed to be positive. After the initial
shock wears off don't be negative, don't give up hope. You are not alone.
It's
January 2008, I am passing through my three year anniversaries, beginning my fourth
year of the battle. Not a lot to update from June of 2007; I still live.
After
16 months on HDK my PSA stared to climb earlier this year. I stopped taking HDK
and switched to Nilandron in February. After my update on Monday (April 21, 2008)
my PSA has continued to rise.
Though
the rise is slow [PSA now 38] and the doubling time slow [7 months] I have decide
to take an aggressive course and begin chemo. I had hoped to start in the next
few weeks but the clinical trial I am going to enter requires me to be off Nilandron
for 6 weeks.
So
it looks like June 9th, or so, will be "C" Day. I'll try to provide more timely
updates but they can always be found at my blog, link above.
The
information below is only my individual experience. Like everything else with
the dreaded disease, everyone reacts differently!
Treatment
day is long and tiring. Typical waiting, testing, waiting, meeting with doctor,
waiting, treatment etc. I always set up my appointments for first thing in the
morning, this means treatment begins around 10-11:00am - By 2pm I'm back home
and usually need a 30 minute nap to recover from Benadryl. I try to work (email
etc.) for a few hours, have dinner and relax. Sleep is nearly non-existent on
treatment nights due to the amount of Dexamethasone in my system.
-
Week 1 is tiring, and I have experienced some lack of concentration, fatigue etc.
I have also experienced metallic tongue, some weeks better than others. Ice chips
during treatment didn't do much, lemon drops help as do other 'tart' foods. Lemonade
etc. I try to avoid hot liquids, they seem to aggravate the issue. -
Week
two I am at least 95% by the 7th day post treatment and certainly 100% by day
10 or so. Week three I have found myself 100% - I have not experienced a loss
of appetite or hair! My red and white blood counts drop considerably but have
recovered by the third week in each case.
Another
item to note is I am one of the younger ones fighting this disease, I am currently
45 and have been in this fight for three and a half years now. I am VERY active
and eat a mostly Mediterranean diet. Again, no one will react the same, this is
just my personal experience with Taxotere.
David's
e-mail address is: davidemerson@flhw.org
