On 9/22/2009 natbug wrote:
Please can someone tell me the side effects of once a month sandostatin.Does it help with heart palpatations fatigue and body aches? I know it is suppose to help with flushing and diarhea. Please help doctors may start me on this medicine next month if they cannot find any other explanation of my elevated blood serotonin levels and symptoms. Please help I am oly 31 and it has been going on for 8-9 years.
Dear natbug, I am a Carcinoid Patient too. I am on 60mg of Sando every 4 weeks. the Sandostatin is made by Novartis Pharmaceuticals. You could probably refer to their website for more info on side effects. I ,myself, have experienced fatigue which is on the list of side effects but I don't suffer from much of anything else. I consider it a life saver. Don't fear this med. You cannot over-dose on it and it will make life more easier to deal with concerning this disease. I am wondering if you drink red wine. I ask because this will cause you to flush severely. There are also certain food that are naturally high in Serotonin. Such as tomatoes, bananas, nuts, avacado, chocolate, pineapple are af ew to mention. If you have taken a 5HIAA 24hr Urine test the Dr. would give you a list of foods to avoid. That is a few of the foods listed. I was also wondering if you had your primary tumor removed. Because this is the most important thing. Lately @ our meetings we are finding that if you go to Sloan-Kettereing Hospital you don't get the kind of nessesary treatment. That is not to say that Sloan Kettering Hospital is not a good hospital but for treating Carcinoid it is NOT. I would suggest you speak to Dr. Richard R.P. Warner @ Mt. Sinai Hosp. in NY. @ 212-241-4299 And I go to a cardiologist who specializes in Carcinoid cancer Dr. Zacks also in NY. @ 212-289-8400. If you are not too ill and can go to a support group I would do that too. Dr.s can tell you all the technical things about Carcinoid but there is nothing better to help you find more information than talking to another Carcinoid Patient and also caregivers.There is a Carcinoid Conference this weekend Sept. 24, 25, and 26 in New Orleans, LA. I won't be able to go but my support group, New Jersey Carcinoid Cancer Group is hosting a 1 day conference on Oct. 17, 2009 in Matawan, NJ. Dr. Warner will be there and you could have a conversation with him and also Dr. Kjell Ober from Sweden who is World renound for treating Carcinoid Cancer will be there also. Which is very exciting for us. He performs many treatments Successfully, that are not available or approved by the FDA here in the USA. I am looking forward to this event. I myself was diagnosed 2 years ago but I believe I was suffering from this at least 5 to 7 years before the Diagnosis. I wish you all the best!, Katsen57