Famous people who recently died of neuro-endocrine tumors:
Dave Thomas (Wendy's)
Derrick Bell (Law Professor and Rights Advocate)
Steve Jobs (Do I really need to say anything)
Audry Hepburn (Actress, appendiceal cancer that was likely carcinoid)
Stuart Scott (ESPN anchor, Appendiceal cancer that was likely carcinoid)
General carcinoid frequencies:
1 out of 300 appendectomies
1 out of 200 in necropsy (incidental)
1 in 40,000 in general population
Sunday, October 23, 2011
Thursday, October 13, 2011
The Waiting Game
After the shoulder surgery scare, I have had two more consultations on my cancer (both planned before the shoulder surgery). I met with Dr. Charles Nutting in Denver about the Sir-Spheres treatment. Dr. Nutting has been doing this treatment for about 7 years and currently does about 100 treatments per year.
Sir-Spheres is officially approved for metestatic colo-rectal cancer which is not what I have but the treatment is frequently applied to carcinoid cancer and insurance has not normally been an issue. Your liver receives about 90% of it's blood supply from the portal vein that flows from the intestine while the tumors receive about 90% of their blood supply from the hepatic artery. Sir-Spheres are injected through the hepatic artery and then get lodged in the tissue fed by this artery which just so happens to be the tumors we want to kill!
Sir-Spheres contain Ytttrium-90 which has a half life of about 2.5 days. This means that, within about a week, the radiation has reduced by a factor of 8. Dr. Nutting says that the amount of radiation emitting from the body of someone treated with Sir-Spheres is similar to that of a high altitude flight (so, not too much). That said, it is recommended that you keep your distance from young children, pregnant women, and sleep in a bed by yourself for about 3 days.
The primary side-affect experienced from the treatment is flu like symptoms (fever, nausea, and fatigue) that show up a few days after the treatment. Normally Dr. Nutting performs an initial injection of a tracer to identify your personal physiology a couple of days before the actual procedure as everyone's actual artery makeup varies. There is also the possibility that treatment is not an option if your plumbing does not direct the majority of the radiation into the liver (the lungs are the next stop after the liver) but that is an uncommon situation.
My second consultation was with Dr. O'Dorisio at the University of Iowa to get his opinion on when we should begin treatment. His radiologist looked at my scans and concurred that my liver burden was increasing but his opinion was that I only had about 10-15% of my liver consumed by the tumors. This means it is probably a bit early to treat as Dr. O'Dorisio generally waits until 30% or more of the liver is consumed.
I can hear you asking already, what do you mean, too early??? Well, there are only a limited number of times that you can receive Sir-Spheres before it is either no longer effective or you have received too much radiation to be safe. Because of this, you don't want to waste any of your ammunition by attacking when it is too early. This treatment only prolongs life and will not eradicate the cancer so waiting a longer amount of time increases the total amount of life I will receive from all the treatments.
So what then do we do now? First we are going to get the symptoms of my cancer under control for now and then we will delay treatment until the liver becomes more consumed. In January, I make my annual trip out to Iowa to meet with Dr. O'Dorisio and we will get a Doppler ultrasound to reassess the tumor burden at that point. I don't expect to have hit the magic 30% point by that appointment but do hope to have my diarrhea and flushing under control.
So, when do we treat? About 9 months ago, a Doppler ultrasound put my tumor burden at less than 10%. I have a personal guess that I will be at or at least close to the magic 30% point in about a year.
The great thing about my cancer is I get the option of waiting which is not an option for so many other cancers. Of course, the bad thing about my cancer is the continual image of the sword of Damocles, suspended over my head, hanging by a single hair and threatening to fall at any time. I will enjoy my time. Everyone is dying from something. I just happen to have the fortune of seeing one of the threats bearing down on me!
Sir-Spheres is officially approved for metestatic colo-rectal cancer which is not what I have but the treatment is frequently applied to carcinoid cancer and insurance has not normally been an issue. Your liver receives about 90% of it's blood supply from the portal vein that flows from the intestine while the tumors receive about 90% of their blood supply from the hepatic artery. Sir-Spheres are injected through the hepatic artery and then get lodged in the tissue fed by this artery which just so happens to be the tumors we want to kill!
Sir-Spheres contain Ytttrium-90 which has a half life of about 2.5 days. This means that, within about a week, the radiation has reduced by a factor of 8. Dr. Nutting says that the amount of radiation emitting from the body of someone treated with Sir-Spheres is similar to that of a high altitude flight (so, not too much). That said, it is recommended that you keep your distance from young children, pregnant women, and sleep in a bed by yourself for about 3 days.
The primary side-affect experienced from the treatment is flu like symptoms (fever, nausea, and fatigue) that show up a few days after the treatment. Normally Dr. Nutting performs an initial injection of a tracer to identify your personal physiology a couple of days before the actual procedure as everyone's actual artery makeup varies. There is also the possibility that treatment is not an option if your plumbing does not direct the majority of the radiation into the liver (the lungs are the next stop after the liver) but that is an uncommon situation.
My second consultation was with Dr. O'Dorisio at the University of Iowa to get his opinion on when we should begin treatment. His radiologist looked at my scans and concurred that my liver burden was increasing but his opinion was that I only had about 10-15% of my liver consumed by the tumors. This means it is probably a bit early to treat as Dr. O'Dorisio generally waits until 30% or more of the liver is consumed.
I can hear you asking already, what do you mean, too early??? Well, there are only a limited number of times that you can receive Sir-Spheres before it is either no longer effective or you have received too much radiation to be safe. Because of this, you don't want to waste any of your ammunition by attacking when it is too early. This treatment only prolongs life and will not eradicate the cancer so waiting a longer amount of time increases the total amount of life I will receive from all the treatments.
So what then do we do now? First we are going to get the symptoms of my cancer under control for now and then we will delay treatment until the liver becomes more consumed. In January, I make my annual trip out to Iowa to meet with Dr. O'Dorisio and we will get a Doppler ultrasound to reassess the tumor burden at that point. I don't expect to have hit the magic 30% point by that appointment but do hope to have my diarrhea and flushing under control.
So, when do we treat? About 9 months ago, a Doppler ultrasound put my tumor burden at less than 10%. I have a personal guess that I will be at or at least close to the magic 30% point in about a year.
The great thing about my cancer is I get the option of waiting which is not an option for so many other cancers. Of course, the bad thing about my cancer is the continual image of the sword of Damocles, suspended over my head, hanging by a single hair and threatening to fall at any time. I will enjoy my time. Everyone is dying from something. I just happen to have the fortune of seeing one of the threats bearing down on me!
Tuesday, October 4, 2011
So much for a successful shoulder surgery
I had wanted to blog about something other than cancer after winning the all tournament goalie award at the Las Vegas tournament but it was not to be. I have had numerous surgeries over the years and have not ever had any complications. Well, that streak came to an end on Monday when I had a severe case of carcinoid crisis in the middle of my shoulder surgery.
It should have been a routine surgery with me in and out of the operating room in less than an hour. Surgery started out just fine and the orthopedic surgeon was able to scope my shoulder and determine that there was no rotator cuff tear and no arthritis. He was just then going to begin to treat the bursitis when one of the nurses asked if I was supposed to be red.
One of the things carcinoid tumors forces upon those of us with advanced liver tumors is carcinoid syndrome. This manifests itself in many different ways from frequent diareah to flushing (redness of the skin) to a rapid drop in blood pressure. Numerous things can cause the onset of syndrome including stress, alcohol, and exertion. I have never had significant syndrome up to this point and thus it was not much of a concern.
Flushing and a huge drop in blood pressure is exactly what happened to me at this point. My skin turned beet red, my heart rate shot to 130 and my blood pressure hit the floor. At this point, they laid me back down, closed up the incision, and attempted many things to try and restore my blood pressure including chest compressions.
Finally, my body returned to normal and they took me out of the OR. Naturally, this was very scary for the surgeon, anesthesiologist, and all in the operating room. I, of course, had no idea what was going on and I feel incredibly sorry for my wife who had to endure this all alone at the hospital.
So, where do we go from here? My shoulder still needs work but we will probably be putting that off indefinitely. Next week, I go see Dr. Nutting in Denver and will be talking to him about treating the liver tumors with the radioactive SirSpheres. Liver tumor burden is what generally causes carcinoid syndrome and carcinoid crisis. The reason is that the tumors are able to inject histamine and other endocrines directly into the blood stream without any filtration.
Another day at home and I hope to return to work on Thursday.
It should have been a routine surgery with me in and out of the operating room in less than an hour. Surgery started out just fine and the orthopedic surgeon was able to scope my shoulder and determine that there was no rotator cuff tear and no arthritis. He was just then going to begin to treat the bursitis when one of the nurses asked if I was supposed to be red.
One of the things carcinoid tumors forces upon those of us with advanced liver tumors is carcinoid syndrome. This manifests itself in many different ways from frequent diareah to flushing (redness of the skin) to a rapid drop in blood pressure. Numerous things can cause the onset of syndrome including stress, alcohol, and exertion. I have never had significant syndrome up to this point and thus it was not much of a concern.
Flushing and a huge drop in blood pressure is exactly what happened to me at this point. My skin turned beet red, my heart rate shot to 130 and my blood pressure hit the floor. At this point, they laid me back down, closed up the incision, and attempted many things to try and restore my blood pressure including chest compressions.
Finally, my body returned to normal and they took me out of the OR. Naturally, this was very scary for the surgeon, anesthesiologist, and all in the operating room. I, of course, had no idea what was going on and I feel incredibly sorry for my wife who had to endure this all alone at the hospital.
So, where do we go from here? My shoulder still needs work but we will probably be putting that off indefinitely. Next week, I go see Dr. Nutting in Denver and will be talking to him about treating the liver tumors with the radioactive SirSpheres. Liver tumor burden is what generally causes carcinoid syndrome and carcinoid crisis. The reason is that the tumors are able to inject histamine and other endocrines directly into the blood stream without any filtration.
Another day at home and I hope to return to work on Thursday.
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