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  1. DanniDe

    Extensive small cell - looking for survivors

    Hello Tom, Thanks for your reply. They did do a biopsy which confirmed his case is not genetic, they are also going to test for markers (PDL1) - at our last appointment the professor discussed the possibility of Keytruda post chemo. We also got the results from his first scan post two rounds of chemo - it came back as no change to the primary tumor in the colon, so currently stable. Lymph nodes and some liver lesions are 20-30% reduced, but some liver lesions appear larger. However He explained that the inside of those cells are dead, and it looks to be inflamed. He told us that they will shrink and they are doing a follow up CT next week out of pre caution.
  2. Hi there, My fiance aged 31 was recently diagnosed with extensive small cell carcinoma of the bowel. He is fit and healthy and this has come out of no where. It started out with some tummy pain and constipation just a few weeks earlier. The tumor started in his colon, which has spread to his liver, and some surrounding lymph nodes. We were told this type of cancer is generally a lung cancer caused from smoking, and it is rare to get it elsewhere. He has never been a smoker and it is not genetic, so sadly this has come down to a case of pure bad luck. Based on this he is being treated as a lung cancer patient and has just finished his second cycle of chemo, consisting of cisplatin and etoposide. Aside from the hair loss and some weight loss, he has had no other side effects and not been unwell at all, which is good to see. Given what I have read online about this ugly and aggressive cancer type, and the rarity of it, I guess I am desperate for hope - I am seeking to find and hear from other small cell extensive survivors. Any hopeful advice or stories would be so much appreciated !