Somatostatinoma Net tumour

I have read the help info on Somatostatinoma net tumour.  A family member has stage four aggressive and has already spread.  They have been told without treatment only few months to live.  They can only start one type of chemo at the moment as not well enough can any who has been through it offer any advice of what could try or if there are any trials anywhere which might help.  Any help or someone who has any advice or been through this is anyway would be great fully recieved 

  • Hi Mia31, So sorry that you find yourself here, the people on this site are amazing and you will get strength from them. My husband was diagnosed with a non functioning pancreatic net at the beginning of 2016. He has been receiving monthly injections of somastatin analogies which have held and slightly reduced the size of the tumour. The only advice I will give you is the advice we were given, do exactly what the consultant tells you to do. Neuro endocrine tumours are rare so I feel all the consultants share knowledge and help each other. I do refer to the Royal free neuro endocrine site from time to time, they appear to be one of the front runners in this field, so I check the info we are given, matches the advice they give on their website. Best wishes