Happy 2012 everyone! Stephanie and I started off the year with a
flight to Des Moines Iowa and then a short 2hr drive to Iowa City to see
Dr. O'Dorisio at the University of Iowa. I have been seeing Dr. Odo
for about 6 years now as he is one of the leading experts in carcinoid
cancer and sees hundreds of carcinoid patients a year as compared to the
two that my doctor in Colorado Springs sees. Obviously, seeing more
patients gives a doctor a leg up on diagnosis and treatment as he has
significantly more experience.
We met this year to
discuss what the path forward is going to look like. 4 months ago, Dr.
Odo said that when we met, it would be with an intent to treat since one
of my blood markers had increased 4 fold over the past 9 months. At
the hospital, I had a repeat of the ultrasound scan I had a year ago and
my tumor burden in the liver has increased from less than 10% to 10%
which is a small increase.
I wanted to explore the options available and see what
the best choice was at this point in time. Obviously, the tumors are
not taking over any of the major organs of my body but that is not the
only thing that needs to be addressed with the disease.
The worst part of my disease from a day to day point
of view is the carcinoid syndrome which manifests itself in two ways for
me. The first, less annoying manifestation is flushing where my head
and upper body will turn red and I will feel heat in my face. This
often appears after periods of exceptional exertion and is a bit
annoying but not too inconvenient.
If you see me at work, I
generally flush about 90 seconds after hiking the stairs from the
basement to the 2nd floor (4 flights of stairs). At hockey, I generally
flush towards the end of a rest on the bench after a shift on the ice
when I am skating out rather than playing goal. When playing goal, I
frequently flush just a little while after defensive breakdown in our
own zone.
The second manifestation is diarrhea. This is
inconvenient and is certainly more annoying. I generally have to plan
where I am and where the bathrooms are going to be just in case the
syndrome creates a critical situation. We have tried increasing the
dosage of sandostatin that I receive to see if that can help reduce the
diarrhea but it has not been successful. Dr. Odo has given me a
prescription for another medication (Cyproheptadine Hydrochloride Syrup)
that we will try and I will also make an appointment with a
gastrointestinal doctor too see if there may be a non carcinoid reason
for the diarrhea.
If neither of these attempts are
successful we may attempt a treatment of SirSpheres to the lobe of the
liver with the greatest tumor burden. The hope is that killing some of
the tumors will reduce the amount of syndrome that I experience.
What comes after that? Well, there is a treatment that has been
successfully applied in Europe for the past 15 years called Peptide
Receptor RadioNucleotide Treatment (PPRNT). This treatment (also
sometimes shortened to PPRT) is not yet FDA approved in the United
States although there is a doctor providing this treatment in Texas for
the low, low price of $60,000. Alternatively, the same treatment can be
had in Basel Switzerland (and Rotterdam and Bad Berka and...) for about
$20,000 including travel and lodging!
What is even better is that Dr. Odo is trying to get this
treatment approved in the United States and he has one of the six
facilities that should have it. Dr. Odo's hope is that the treatment
will be available in the next year although he has been saying this for
about three years. PPRNT is another treatment where radiation is tagged
to a key that fits a lock in the tumor. This makes me glow for a
period of time but the end result is that the treatment can give another
3 years of progression free life.
Of course, there are problems with the treatment in that there is
collateral damage from the radiation and the primary casualties are the
liver and the kidneys. The treatment can then be repeated as long as
there is sufficient kidney and liver function to survive the treatment.
The liver will regenerate but the kidneys are another matter.
Unfortunately, there is no way to prevent injuring the kidneys so we
need to be careful not to use too much of this treatment.
Overall, things look relatively positive for me continuing to annoy all of you for years to come!
