teetlee Posted March 2, 2003 Share Posted March 2, 2003 Well, I got my test results back. They did confirm I have atypical carcinoid lung cancer with mets. in 2 areas of the liver. Not exactly what I wanted to hear about the liver. Later this week I will start on Sandostatin injections 3 times a day. My onc. says this will help with any symptoms and has been known to contain the tumor. It doesn't shrink it just contains it. Maybe. My deepest hope is that this drug will help with the arthritis. The onc. says that it would be very unusual for arthritis to be a symptom of carcinoid but he would not rule it out. As far as we know, I don't have any of the symptoms of this cancer i.e. high blood pressure, diarrhea, flushing,or excelerated heart beat. I would appreciate chatting with anyone out there who has had any kind of experience with this type of lung cancer. Thanks, Teet Quote Link to comment Share on other sites More sharing options...
john Posted March 5, 2003 Share Posted March 5, 2003 Glad you are not having any symptoms from the cancer. You might want to ask about sandostatin LAR. It is given less than 3 times a day and may be as effective. Again I am not a doctor but here is a reference http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract http://hometown.aol.com/asimmsjr/can4.htm Best of luck. Also there are specific sites for carcinoid tumors, though of course this message board also provides a lot of support Good luck john Quote Link to comment Share on other sites More sharing options...
teetlee Posted March 6, 2003 Author Share Posted March 6, 2003 Hi John. Thanks for the encouragement. According to my onc. we will start with the 3 injections a day. If I tolerate that well then we will go to the LAR once a month. I'll let you know how it works out. Teet Quote Link to comment Share on other sites More sharing options...
Guest Karen L Posted March 6, 2003 Share Posted March 6, 2003 Did they do a 24 hr urine for 5HIAA? My husband started having red flushes above the neck, but they also feel he might have had a reaction to the carboplatin. Anyway, they wanted to rule out carcinoid tumor as that could alter which chemo to use Quote Link to comment Share on other sites More sharing options...
teetlee Posted March 6, 2003 Author Share Posted March 6, 2003 Yes Karen, I did have a 24 hour urine test for 5HIAA. It was positive for a high serotonin level. A normal would be less than 10% mine was over 70%. There is also a blood test that can be done. But my onc. said I didn't need it. Hope things work out well for you and your husband. Warm regards, Teet Quote Link to comment Share on other sites More sharing options...
Guest Karen L Posted March 7, 2003 Share Posted March 7, 2003 Teet Did you do the diet thing beforehand? From my research there is Sandostatin (very expensive if your insurance doesn't cover it) and some other types of chemo. We took the urine in and they drew some blood. My husband didn't find out what for. This carcinoid is a whole new loop for us. We're hoping it will be ruled out. How are you doing? Quote Link to comment Share on other sites More sharing options...
teetlee Posted March 8, 2003 Author Share Posted March 8, 2003 Karen I didn't do any tests that called for a diet. Although I did read about them, my onc. didn't seem to think it was necessary. I didn't do a blood test because I take a medication called Serzone which has something to do with the serotonin in my body and my dr. was afraid I would get a false return on the test. I will be starting sandostatin soon. It is very expensive and the only way my insurance will pay is by mail order. I tried all kinds of chemo and none of them worked because I didn't have nsclc but had atypical carcinoid. From the reading I've done on the internet and talking with my onc. this carcinoid sounds like it grows slower than any of the other cancers. My cancer was found over 2 years ago and it hasn't moved one bit either way.I understand the sandostatin will help with the symptoms and also contain the tumor. I have tumors in my left lung, lymph nodes of the media stinum, and in the liver. I have developed rheumatoid arthritis and diabetes. These may or may not be a result of the carcinoid. Although they all involve the endocrine system. Probably more info than you wanted. Hope all goes well with your husband. Teet Quote Link to comment Share on other sites More sharing options...
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