hello everybody, getting a little fed up that results through from the last scanned octreotide scan come out clear. This is the third scan I've had, but the doctors still tells me.carcinoid syndrome still have all the symptoms, and they're getting worse, fell over twice last week, and it's a Long Way down when you are 6 foot four lol but seriouslyI serotonin levels of over 1700 and above all the symptoms of asthma, get very short of breath, just talking if I'm doing any training. Afterwards, I shake from head of uncontrollably and a burning sensation feels like I'm slowly cooking and my eyes feel like they're being deep-fried very tired all the time but still managing to go to work but not every day can't get up early, any more, takes too long. The sleeping, very often now if they can't find the tumours do I have carcinoid ? anybody have any idea regards David
FormerMember
Hi Duff - Have they done a PET scan yet? This is (I think) the most sensitive form of scan, and will pick up even minute amounts of cancer cells. I know it's not performed everywhere in the country, but might be worth mentioning. I had one soon after diagnosis, and it picked up 2 small spots in my liver that hadn't shown up in CT or MRI.
