Carcinoid Tumors

[family1317]

hi..its shea again,,just wanted to update you all who have asked some ?'s..well i just got back from md anderson this past saturday..1-9-09..where i will starting my clinical trails on the 26th of this month..to answer one of the young ladys ?'s is that i was diagonised in april of lasy year,,and had also 2 ft. of my colon removed along witha comlete hysterectomy .i have 8-10 tumors that are in my liver..i got a little bit of good news this time when i went back to the hospital the tumors have not spread or gotten any larger...praise god!!!!well my mother has the cancer not the syndrome like me..she has had it for about 15 years..my body releases to much serotonin and had caused the syndrome to be more spread out through my body...oh boy yes im scared but i have the best coach in the world,,,jesus!!!!im in stage 4-b..im currently on sandostatin 4x daily..i give my own injections at home..i have been on this for 8 months and getting ready for my trials...one is interferon with sandostatin...and the other is avastin with sandostatin..dont know which one i will be given,,the computer randomizes which one will be given...they told me chemo nor radiation will help me at all and this is all they have to offer me..it was very scarry but i have to try whatever i can for me and my family..im only 34 years old and have my whole life ahead of me ,,so i thought...thanks eveyone for your prayers and posts..i hope to be able to help anyone with a little more understanding about a cancer that not to many people or doctors know about...god bless you all..and please keep on praying for my family and i and all the others who have been faced with this cancer....always,,shea

[exculiberv]

Hi it's nice to know that there is a forum like this that people who have the same illness that we have can share each others experiences. I was diagnose with carcinoid since December of 2006, I think almost the same time as yours. At first it took me awhile to convince my gastroenterologist that my symtoms is worse than just irritable bowel syndrome. In the end when I was asked to have this white cell scan then my doctor realized that I have tumour in my liver which has been confirmed by an ultrasound. After that I was scheduled for liver biopsy and the result revealed that I have carcinoid.When I was referred to an oncologist I thought everything will be clear to me. My oncologist don't have much experience about carcinoid so I did a research to find the best docotrs who could help me with my treatment. With the help of internet I found the doctor in London who specialize in this cancer. I'm now with Dr. Martin Caplin care. Every 4 months I need to see them for ct scan, blood works and this coming 23rd of January I have a schedule to do echo cardiogram. I was told by my specialist that carcinoid can attack our heart and can cause valve problem. I'm on monthly treatment of Octreotide 30mg intramuscular to supress the symptoms of carcinoid syndrome. At the moment we don't know my primary carcinoid but they said the treatment would be the same if we know where it is. For the past 2 years my condition is in stable form. I gained back my lost weight of around 7 kg. No more flushing and diaorrhea is much less now. Stomach cramps is still there but it can be avoided if I could maintain a small frequent meal regime rather than my usual. I'm waiting for the trial medicine that they are going to give me, sorry I forgot the name of the trial drug. I was told that I don't need surgery at the moment because of the location of the tumour is very vascula ie. liver, lungs and in my back bone. Is they will try to remove all of it. they said there's a chane that it will spread out plus the recovery period would knock me down tremendouly. They told me that if there will be tumor progression I can have the two treatment that they have tested on me which is the Ytrium 90 with octroetide and MIBG. So figers cross I hope I can over live my cancer or maybe in the future cure will be available. Thanks for sharing your life with carcinoid I hope that this information that I mentioned can help you in anyway. Take care.

[exculiberv]

Hello I'm not an expert but I can share you some of the knowledge I learned after reading alot of materials regarding this carcinoid because I also have one. Symptoms normally appears if the the liver has beed involve in carcinoid. The symptoms would be like flushing of the face (turning red and feeling warm, diaorrhea, weight loss and tiredness. My doctor monitor my condition by doing ct scan, bloodworks and urine sample. Blood works would be to check serotonin level, chromograin A and B. For the urine they will do the 5HIAA level it is the by product of the chemical that shows carcinoid activity. I hope this will help you in a way. Take care.