Hello

My husband was diagnosed with incurable NETS in February this year, it has now spread to his lung, liver and bowel. He did not react well to his first chemotherapy treatment and is now on a second line treatment which will hopefully prolong his life. It seems to me that being positive is the best way forward and reading some of the posts on here has been really helpful. Thank you

  • I know NETS is incurable but have you seen one of the Neuroendocrine Consultants at the Royal free in London or in Cardiff.  I have three tumours,, the largest in my liver with Mets and I have been started on a once every 28 days injection called Somatuline 120 mgs as all NET patients receiving this treatment hopefully I am told can slows the rate of growth of tumours.  I haven't been offered chemo, radiotherapy as this is the latest new treatment available. Can you ask your Consultant.  Be positive, I am living every day as much as I can.

  • I'm sorry to heat that you too have NETS. Thank you so much for this information. My husband is being treated at the Churchill hospital in Oxford. We are seeing the doctor on Thursday and I will definitely ask about Somatuline. 

    We were told that without chemo he only had months and so far he has not tolerated it well. Thank you again and keep trying to enjoy every day