Carcinoid Status Update

It's scanning time again. Tomorrow I go in for an Octreoscan. That is the special nuclear medicine scan done to detect carcinoid tumors. The tumors do not necessarily show up in a PET or CT, probably because they can be small. I had a scan done on November 20, 2008 that showed abnormal absorbtion of the radioactive compound in the dome of my liver. That would indicate carcinoid tumors there. Then I began using Octreotide as medication, and the tumors got smaller.

I have not had an Octreoscan done this year because all through 2009 they did not show anything. [Plus, they cost my Insurance company over $10,000.] So, this year we tried doing an MRI in the spring. An MRI exposes me to less radiation, too. The images from the MRI were very clear and show a couple lesions in my liver that were only 2mm. However, those are not the carcinoid tumors. The surgeon removed one of those lesions in 2008 just so my oncologist could be reassured about what it was, and it was harmless. So, the MRI found structures that are only 2mm, which was nice to know. The two carcinoid tumors that I have had removed have been less than 1mm.

So Monday and Tuesday I'll be back at UCI Medical Center in Orange, California. I'll arrive at 9:15 and be hooked up to some radioactive Octreotide about 10:00 am. Then I wait about 4 hours for the first scan. I'm free to move about the campus or go shopping across the street. At 2:00 pm the technician does the first scan. I'll probably leave about 4:00 pm.

Tuesday morning I return at 9:00 or 10:00 to have the second scan done, and we go through the whole routine again. It takes about 1.5 hours for the longer scan that follows one that's only 40 minutes long. Immediately after the scan, I will go across to the Chao Family Cancer Center and have an injuction of my long-acting Octreotide. Then I should be set for medication for 28 days.

Lately, my lab results keep coming back normal. My Chromogranin A is below 10 and my gastrin is normal. That's a great frustration for many carcinoid patients. (I follow what they write on Cancer Compass.com.) Some patients don't get diagnosed because the high amounts of hormones in their bloodstream don't always show up when they are at the lab. I joke about hiring a phlebotomist to follow me around and draw blood right when I get sick. I have been reading comments lately that the ourpouring of chemicals into our blood is in cycles, not constant. That would match what I have been finding.

Since I was put on Welchol I have been much better. Thanks for your prayers. It seems to work very well for me, and I have not been sick for a few weeks. So I continue to use the Welchol and Octreotide to treat carcinoid. So as long as I can take a 3-hour nap five days a week, I'm doing OK.

Love,
Sharon