[livingwith]

I began having episodes of excruciating abdominal “spasms” in my mid twenties. I had a battery of tests and was told I had a spastic colon. Throughout the next twenty-five years I had cysts on my ovaries, A “hormone imbalance” an atrophied gallbladder and multiple “treatments” for irritable bowel syndrome.
I also had episodes of extreme flushing, which was attributed to menopause since I had a hysterectomy at age 39.I had to have cardiac bypass surgery at age ...Read the full article

[zebransa]

I am new to this forum but your post sounded a lot like me. I am 60 years old and was diagnosed 3 years ago (although I diagnosed myself in 2002) and had surgery to debulk around the mesentery artery...with removal of some intestine and tumors wrapped around the ileum. I have been on Sandostatin LAR 30 injections every other week for 2 years. I also take the Octreotide PRN as needed for symptom control. I went on disability after my operation. Why haven't you applied for disability? Medicare comes with it. Have you every had symptoms of excessive sweating on your head/face??? This is something new for me. The Sandostatin seems to relieve any other symptom. I am also on pain meds for pain in the area of my liver. I need another operation for tumors in my upper body but have not recovered enough from the last one! I am very "nutritionally challenged". You didn't say what kind of side effects you had when you were on Sandostatin. I was just curious.

[lynnwells47]

Sorry I took so long to respond to your questions. The side effects of the Sandostatin were abdominal pain and diarrhea- the same symptoms of carcinoid syndrome. I still had flushing episodes on the drug, but they were less severe. The one side effect that bothered me the most was an irregular heart rate. I was hospitalized for a battery of tests and later had another heart cath. All of my tests were okay, but when they did the cath, they opened up my main coronary artery again. The irregular heart rate and palpitations are infrequent now.
Have been off the Sandostatin since end of October and the carcinoid syndrome symptoms are more severe, but they seem to settle down occasionally. I do not feel things are any worse than they were while on the injections. I have had pain in my right upper hip, rt hip joint and rt lower abdomen for some time now and that seems to be getting worse. Hardly a day goes by when that pain is not there and it gets worse as the day goes on. We have discussed getting an MRI to see if the pain is from my back or hip and also a bone scan to see if the carcinoid has possibly spread to my bone. My liver is enlarged, and the pain could also possibly be referred pain from the liver. I may proceed with these tests just to know for sure what I am dealing with, but otherwise I have made an agreement with my 0ncologist that we will not do any expensive testing at this time because I do not intend to seek any treatment as there is no cure.
As for disability: yes I sought that after my last surgery (nearly 2 years ago) and was declared disabled. I was only eligible for medicare as of last July. Because I am not 65 yet, I cannot get a supplemental insurance that would cover my preexisting condition. medicare and the advantage plan I have do not cover more than 80% of the cost of the injections. The last one I got, the original charge was $13,000. After what medicare allowed for it, my 20% came to nearly $600. I do not want to pay that kind of money every month to take an injection that has not really benefitted me that much.
I hope this answers your questions. Let me know if you need anything else from me. I am a registered nurse, although I never did much with cancer patients.