• anyone undergoing octreotide and afinitor treatments and if so what can I expect, I will be starting this week.

    Asked by waynej on Sunday, January 8, 2012

    anyone undergoing octreotide and afinitor treatments and if so what can I expect, I will be starting this week.

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    6 Answers from the Community

    6 answers
    • shebear's Avatar

      Sorry I can't help. I have not even been put on octreotide yet. I am assuming that you have carcinoid syndrome.

      Yesterday, the cardiologist who diagnosed me, was furious at the treatment, or lack thereof, that I have received so far. My tumors are micro-tumors and I had been told that there is nothing that can be done. My cardiologist gave me hope for the first time since this started.

      Who are you seeing?

      over 4 years ago
    • waynej's Avatar

      Thanks for the answer, I have 2 microtumors on my liver due to the spread of a pnet that was removed in october 2011, I am seeing Dr. Hageboutrous at Cooper Cancer in South Jersey.
      Where are you located?

      over 4 years ago
    • edbellinger's Avatar

      My pnet was removed in February 2003. Started treatment last November. I will be getting a cat scan next week. I am praying for improvement.

      over 4 years ago
    • susie54's Avatar

      I've been taking daily octreotide injections (3 times/daily) subcutaneously. Initial reaction was similar to a "hot flash"...felt extreme heat in chest and head that lasted about a minute and dissipated. Getting this drug intravenously gave me a wave of nausea. The injections are definitely worth it in terms of controlling symptom of diarrhea. I'm not sure if there is any conclusive proof as to whether it affects tumor growth.

      over 4 years ago
    • edbellinger's Avatar

      I have been on that treatment over a year now so far it has not spread any further it has not disappeared either. I just hate the swelling I get in my legs and feet.

      over 3 years ago
    • Beeps' Avatar

      I've been on the Sandostatin LAR for almost a yr. none of my tumors were operable.... However, at present they are shrinking. An MRI done about two weeks ago had results stating tumor on the pancreas not visible? I've had minimal side effects from the drug. I get the shot every 21 days. Prob. The biggest thing... I'm pretty much always tired.
      I talked to the Dr. About adding Affinitor... He suggested not changing anything given the results I'm getting right now are pretty miraculous! Good luck ! Hope your results are like mine! Blessing!

      over 3 years ago

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