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A Question From sarasand About Rare Cancers

  • sarasand's Avatar  

    Question 3 months ago

    sarasand posted a questionRare Cancers

    Has anyone received chemotherapy for Neuroendocrine tumor? Doc says no data on success. Other option is Sandostatin

    The octrotide sandostatin shots supposedly slow growth, but cannot cure. There doesn't seem to be any data on whether chemo can be successful in stopping the spread of NETs.

    • waynej's Avatar

      Answered Question 3 months ago

      waynej answered

      I am currently receiving sandostatin injection every 28 days and take Afinitor 10mg once a day for a pancreatic net that was removed in oct 2011 but found 2 lesions on the liver. check out website www.nccn.org, real good info.

    • Karen's Avatar

      Answered Question 3 months ago

      Karen answered

      I am currently being treated for pancreatic cancer with mets to the liver. Started on sutent for 3 months, with poor results. Am now taking afinitor 10mg daily, just started about 10 days ago. I am being told that unable to cure, but hope to reduce tumors, as long as I can tolerate taking medication.

    • sarasand's Avatar

      Answered Question 3 months ago

      sarasand answered

      Thanks, Karen & WayneJ! We were also told no cure, just hopefully a slow down. Will keep you posted after we go to Moffitt next week. Hang in there. Hope the afinitor works for both of you!

    • edbellinger's Avatar

      Answered Question about 1 month ago

      edbellinger answered

      I am also on sandostatin and Afinitor since November. Have survived this cancer since 2002, but they still say there is no cure.

    • sarasand's Avatar

      Answered Question about 1 month ago

      sarasand answered

      Thank you all for your responses. Hopefully the sandostatin and afinitor will keep us all going for years to come! Moffitt Cancer Center in Tampa, FL is starting clinical trials on the next generation of sandostatin. My husband is not eligible as he has had two additional types of cancer in the past. Don't know if this might be helpful to any of you.