Current Roadmap

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!