Hello
I was diagnosed last December with Neuroendocrine cancer. The main tumour is in my small bowel, Stage 2, with secondary tumours in the liver. I also have carcinoid syndrome as a side effect. I have a lanreotide injection every 28 days and have been told this has slowed the growth of the main tumour and it is now under control - the tumours in my liver are responding very slowly to the injections.
My main problem now is diarrhoea - sudden, extreme and very frequent. I am on a high protein high calorie diet and finding it difficult to gain weight (a great concern) and lead any kind of normal life. Also I have protein drinks twice a day and several Creon tablets with food throughout the day, with other medication. My medication has been reviewed and changed many times in an attempt to solve my diarrhoea problem.
Has anyone experienced this problem? I would appreciate hearing from you and anyone with a similar cancer diagnosis.
Thank You
Hi Marcos
Welcome to the Online Community and the Neuroendocrine group.
I am sorry that you have not yet had a response to your post but it can sometimes take a few days for someone in a similar position to see it and reply.
I am sorry to hear of your diagnosis in December and understand it must have been a difficult time for you.
My cancer was different to yours but my treatment did cause diarrhoea with frequency and urgency and I know how debilitating it can be. I am sorry that the reviews of your medication have not helped. One thing that helped me was to keep a food diary and also a bowel chart to help identify what foods would help things and what would make things worse. I am not sure whether that may be something worth trying.
I wonder also whether a referral to a specialist dietician would be worth asking about.
With having such frequent need for the toilet it can add to anxiety when out and about. I will pop a link to some info about a Can't wait toilet card in case you have not heard of this. It may also be an idea to consider a Radar key. These can be bought on line inexpensively.
Using public toilets | Macmillan Cancer Support
There is some info here that may be of some help.
Cancer and weight loss - the building-up diet | Macmillan Cancer Support
Another option would be to give the Support Line a call and talk to one of the nurses about the diarrhoea and weight loss. The Support Line is available from 8am-8pm daily. This would be the quickest way to get some answers.
Or alternatively you could post for some advice in the Ask an Expert section. I will pop a link below.
(+) Ask a Nurse | Get answers about cancer | Macmillan Online Community
Hopefully someone who has had experience of this will now see your post and be able to offer some more specific advice. In the meantime if there is anything you need, then you know where we are.
Jane
