Anyone out there that suffers from Carcinoid Cancer and its affects. What treatment you having. Its gone from small bowel. Which part of i lost. Now spreading across my Liver. Like your thoughts please.
i had part of small bowel and half large bowel removed in January . After urine and blood tests I was diagnosed with carcinoid syndrome , it had already spread to my liver . However , CT scan didn’t show any ‘functioning’ tumour . I take 12 loperamide a day and creon to process food and have recently seen a dietician and been given build up drinks . I have also started on a four weekly lanreotide gel injection to slow growth of tumour and lessen the effects of the carcinoid syndrome . I still suffer from severe diarrhoea and fatigue and have lost a lot of weight but the flushing has lessened to an extent following the injection .i have been told I may go onto a three weekly injection if things don’t improve . What treatments have you been offered to date ?
i had part of small bowel and half large bowel removed in January . After urine and blood tests I was diagnosed with carcinoid syndrome , it had already spread to my liver . However , CT scan didn’t show any ‘functioning’ tumour . I take 12 loperamide a day and creon to process food and have recently seen a dietician and been given build up drinks . I have also started on a four weekly lanreotide gel injection to slow growth of tumour and lessen the effects of the carcinoid syndrome . I still suffer from severe diarrhoea and fatigue and have lost a lot of weight but the flushing has lessened to an extent following the injection .i have been told I may go onto a three weekly injection if things don’t improve . What treatments have you been offered to date ?
Hi thanks for reply. I too have the injection every month since 2015. But body getting imune now.
They cost nhs £936 a time. But mine is spreading. The symtoms last several hours. I had 5 attacks Weds gone. They are not nice. You take care ok. Chin up.thanks again.
I was given the news this week I have a net cancer in small bowel liver spine and the bit been bowel and liver
My petscan was a waste of time as they couldn't see much so went back to the ct scan images
I've got to have a heart scan and a mri scan within the next 6 weeks and have been referred to a hospital in London
My Dr said about a monthly injection.assuming this is the same. I'm so tired .I don't want to do anything anymore and have only had this 2 10 weeks knowingly
