I am currently going under tests for suspected Carcinoid syndrome. I am experiencing all of this as well. But the flushing is the worst. I hope you will stay strong
Hi Craig, I have been living with carcinoid cancer for 11yrs now. I have been on octreotide 30mg twice a month for all this time. I had 18in bowel out, gallbladder removed and 68%of my liver cut out.there was numerous small lumps in the liver too small to cut out, so they were hit with alcohol. Like you and others, the symptoms are horrific as they can flare up with no warning. Spare clothes and bathroom accessories are always available in the car etc. Flushing yuk, just like the change of life. But when I first started getting symptoms way back in 2008, I found I was wearing and so short of breath I couldn't walk or talk, I had to stop and catch my breath before talking. I collapsed at home and then off to hospital, where they thought I was in labour, my belly was huge with a enlarged liver. Life has gone on from there. They gave me 2yrs to live and here I am, 10yrs later. I am now 75, love sailing in strong winds, have sailed for 5 months without being near a dr, sometimes 200 miles out to sea. Hubby learnt how to give me my "bum darts" and we lived life to the fullest. I have just had another scan to find the tumours have now spread more in the liver, and also to the peritoneal wall. It has also damaged my tricuspid valve, which I am now having a look at having it replaced. But, not to worry, as long as I have family and friends, good medical, plus sailing what more could a girl want. To all carcinoid sufferer's out there, make sure you have fun. Thinking of you all. Cheryle
I am in year two of NETS and I live in the US, I had to watch your video to find out what’s going to come . I have tumors in my medistinal lymph nodes and metastasized to lung ,liver and small intestine and peripancreatic area. I learned more from you than I have in a year . Thank you for sharing!!
My partner has neuroendocrine cancer. Several visits to GP due to abdominal pain and not being able to go to toilet. Blood tests and stool samples all came back normal. GP decided he was constipated and prescribed movicol and senna. For 6 weeks he visited his GP and was given more laxatives. He was losing weight and all the red flags were there but he was refused a scan. It was only when he saw a different doctor he was sent for scan. He had a massive neuroendocrine tumour blocking his small bowel and had emergency surgery resulting in needing a stoma bag. After yest it was found he had tumours on his liver and in his abdomen. He then had more surgery to remove some of his liver and gall bladder removal. He is on loranatide injections once a month and his sweats are terrible. They said because this kind of cancer is slow growing that he had probably had it for 10 years +his own GP had never heard of this cancer and because of his lack of knowledge my partner nearly died as he developed collapsed lung pluresy pneumonia and empyema which required more surgery. I really feel for you as its a terrible illness. I think GPS need to educate themselves more and just because test results come back normal doesn't mean there is nothing wrong. I Hope you have many years ahead of as I do my partner.
A very moving story . Thanks for sharing it Craig. I wish your first doctor had taken you more seriously earlier. I wish so much time had not elapsed so that you could have been started on treatment before the cancer had spread so much. I was fortunate in that I had only one visit to a family doctor and one to a specialist before the hunt was on for the diagnosis. So I had less Mets than would have been the case if they had wasted valuable time as on your case. I also like you know something of raising young children when the dad had health problems. Dear Craig I will be keeping you and your family ony prayers.
