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Ronald Van Iwaarden Journey
Hey! Welcome to the club!!! I was first diagnosed in October of 2001 with a complete small bowel obstruction due to a 1.6cm tumor. I had 15cm of the Illium removed along with a wedge of a few mescenteric lymph nodes and a tiny wedge of liver. All the lymph nodes (I think three) showed tumor and the small section of liver did as well but also had clear margins so the small amount they removed had all the tumor in that spot. As you have probably heard, Carcinoid is a very slow growing cancer but don't let anyone tell you that it is benign. Carcinoid cancer often has some annoying side affects called carcinoid syndrome. Carcinoid syndrome often manifests itself in many ways, the most common being diarrhea and flushing (redness and heat) in the face. Syndrome is often aggravated by other tings such as alcohol, exercise/exertion/excitement, or some medications including those whose names end in 'ine' (Morphine, Epinephrine, ...). I am treated both locally by an oncologist in Colorado Springs as well as an expert (Dr. O'Dorisio) at the Univerity of Iowa in Iowa city. The reason for both is that Carcinoid is a very rare cancer and it is not likely that many non experts have seen more than half a dozen cases in their careers. There are many experts throughout the country and I chose Dr. O'Do after checking with a few but there are many excellent choices. My local oncologist is usually very good about following Dr. O'Do's recommendations. The carcinoid specialists are all wonderful and usually give out email addresses, cell phone numbers and other ways to contact them. As to treatment, you almost certainly need treatment of some sort. The most standard treatment for Carcinoids is Sandostatin which is given sub-cutaneously three times a day or through Sandostation-LAR which is given intra-muscular once every 28 days. This medication reduces the amount of carcinoid syndrome you will experience and tends to slow the growth of the tumors. Things you need to start: 1) Get a carcinoid panel done on a regular (every 3 month) basis. This panel is done by Intra Sciences Institute (ISI) and can be drawn by your local lab (Qwest does mine). It does require a 'Z' tube which is a bit non-standard. There are two measures from this panel that I follow regularly: Chromogranin-A and Pancreostatin. Your exact level is not too important but what is important is to follow the trend of those numbers. You want level or decreasing but we all eventually start increasing (mine did about 6 months ago after 6 years of level). 2) Start getting information. Medicine should always be done with knowledge of both the patient and the Doctor. Doctors often know more than we do but make sure you are on top of what is currently going on. You probably want to get connected to the Yahoo carcinoid newsgroup as it is moderated and only provides information. There is another group on ACOR but it often gets a bit annoying with bickering. A support group just started in the last couple of weeks up in Denver and our next meeting will be in about 3 months. I cc'ed the coordinator of the meeting, Jeanne Lambert, on this email. Additionally, there is going to be a run for hope 5k in Fort Collins in July which I am going to join in and many other noids will be there as well. You can also go to the following web sites for more information: http://www.caringforcarcinoid.org/ I have been living with this for 6.5 years now and, most of the time, it leaves me alone as long as I get my dose of Sandostatin-LAR. I coach my 7 year old son's soccer team, play ice-hockey 2-3 times a week and set a new personal best this past winter: 30 ski days! All cancer sucks but at least we have the 'diabetes' of cancer. If you would like you can also feel free to give me a call: Home/Evenings: (719)481-5647 Work: (719)721-9873 (not often at desk but you can try) Cell: (719)459-2328 (Doesn't work at work...) --Ron |