Zollinger-Ellinson

Hi out there to any NET patients:-) like you...I do a lout of research due to our diagnosis being so difficult to reach .I had surgery 3 years ago to tale out a length of small intestine with t2 tumour...and FINALLY was pain free...I say FINALLY because..lime you probably I have had random attacks of excruciating pain over at least 30 years.

Unfortunately I Am now a patient with metastases in the liver (had diagnosis a year ago)and am ACTIVELY working on the Whole body /mind approach as well as Lanreotide injections monthly (90mg).at last I have an appt.at Royal Free...I hope to discover if my cancer is a genetic thing ...as my maternal Grandad died before I was born of 'stomach cancer and secondary deposits in liver at 59 yrs.My Mum suffered 'stomach pains'for years and finally operated on to remove half stomach and part of duodenum 'due to multiple OLD ulcers 30 years later died of Multiple Myeloma at 73.I am 72! My niece is suffering the random attacks I had now....any one else have this link?

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  • Hello, yes my husband had duodenal cancer, he had an operation to remove the tumour, but it was already in the lymph nodes, which because of the difficult position of the tumour, was impossible to remove all the lymph nodes involved. The cancer eventually passed to his liver, and was offered Lonsurf, a new chemo drug. Before he started Lonsurf, he fell ill with Sepsis and Pulmonary Embolism, this was over Xmas. It weakened my lovely husband, and he eventually passed on April 12th. I believe it was the Sepsis that killed my husband not the Cancer. My husband lived 2.1/2 years and they were wonderful years, he was 73.

  • Thank you SO much for letting me know about your beloved and his journey through his cancer.Bless his memory

    I am 73 next month and obviously hoping to continue to link up with peole such as yourself:-)