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.
As carcinoids are a type of tumour of the neuroendocrine system, I've had a look through the forum for members who have mentioned they are living with or caring for someone with NETS (and carcinoid tumours/cancer) and wanted to put you in touch with [@kiki63], [@AJ1234] and [@BuddyK].
Hopefully they'll be along soon for a chat but you can also have a chat with our cancer nurses about this on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.
We have a section about Neuroendocrine tumours, which mentions carcinoid syndrome, as well as living with it just here.
My husband was diagnosed with a mid gut primary with spread to lymph nodes, peritoneal lining and (now) liver in Feb 2019. This was after 18 months of pain and other symptoms.
He has a monthly Lanreotide Autogel injection but this makes him feel very poorly. He isn't eating and is losing weight and suffering from fatigue, hot flushes, diarrhoea and nausea and vomiting. The medical team have said it is very limely he has carcinoid syndrome. He is very low mood wise. I think he is fearful that even with the injection, he will feel like this forever.
He has the DOPA PET scan scheduled early July. This will then complete the investigation phase and a discussion with the specialist will determine whether they will operate to remove as much of the primary as they can.
I think he feels that although the prognosis is positive I.e you will live for many years, if it continues like this, with this quality of life then what?
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.
Hi there. I too have the same injection. His he on the full dose. Im on 120g same duration of every month. Believe it or not they say bananas are good for the symtoms. But eat them when the skin is turning. As nature is putting good chemicals into it.
My symtoms are similar. I dont actually have sickness but feel it.
Also weight has gone down by several stone. You can get drinks from your Doctors to bulk up. Drink wisely.lol as you put on weight fast. But they are nice. Hope this helps you.
He had his latest injection on Tues and they increased him up to the 120 dose. Milder diarrhoea this time but it's the flushing that bothers him. Says it's very discomforting..? I'll try the bananas but he's really only having a few mouthful of food a day. We have the Fortisip drinks and he tries to have one a day but again, the nausea isn't helping!
After 18months of false diagnosis ( h-pylori, pancreatitis, gastritis, hiatus hernia) we've only just been referred to QE Birmingham. It's early days with the injection - this is only the third so have been told it can take a while for the body to adjust and feel the full benefits.. ? As I said previously, I think his biggest fear is that we see no improvement and this is it...forever!
Ive been on those injections for 30 months. But im hoping on next check up in July. That may change. It does get better in time. But injection now only lasting a week or more. Been on it to long. They say 2 years about is good. It surrounds tumours and slow down symtoms. Mine is on the move. Started in small bowell. Lost part if that. Cant operate as too many on Liver. Now tumours spreading on Liver.
Such is life. Stay well. Wish you the best. Oh im in Kent.
We've not been told that the injections have a shelf life . What's the plan once they stop working then? We were told other patients have been on them for 10+years....
Hubby is actually saying he's starting to feel better so it looks like he has a 48hr reaction to the injection before he starts to feel any benefit. He has just eaten a sandwich which is the first substantial food he's had for weeks.
We don't know yet if they'll operate on his primary which is in the illeum. They won't touch the grain size tumours in his peritoneal lining and they haven't discussed his liver - all we know is a scan showed 5-10% tumour volume. He's worried about his lungs because he's started wheezing but I know that can be a result of the syndrome.
