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Typical Carcinoid Tumor in Lungs

Neuroendocrine Tumors (NETs) | Last Active: Jan 31, 2023 | Replies (31)

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Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size reduction in tumor to possibly make resection possible. Although early indications were positive and I was able to tolerate the drug. the Oncologist decided out of the blue that it was not worth the effort or potential risks (news to me). Afinitor was stopped. A suggestion from Dr. Wolin of Mt Sinai in NY was to take Afinitor with the Lanreotide. the two drugs seem to work better. Again Afinitor was stopped. This has thrown me for a loop and the decision to stop that drug almost seems arbitrary. I really do not know what to do. So you asked a great question Coleen. I have sought alternative treatmentas since my initial diagnosis and it seems that unless I get the World Health Organization to back me up the suggestions are ignored. You might think that it is time to go elswhere...only to travel a great distance?.I am in Charlotte NC. I simply cannot afford to hop across the country to get a monthly shot. We are in our 80s and I care for my wife on a daily basis. Novartis the maker of Afinitor has been very kind to me and made Afinitor available. But I guess that may be the story of alternative treatments. You will get your shot and take your chances. there are no guarantees. Live well......be happy......thanks for reading GAP

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Replies to "Hello Again. I was very hopeful that Afinitor would help. My oncologist was seeking a size..."

@gapsc, I, too, would be perplexed in your situation. It can take a lot of energy to continue to asks questions as a patient, but I encourage you to continue to ask why. Perhaps they haven't explained the risks vs. benefits clearly enough. What is your understanding of the potential risks?

Hello @gapsc

When you last posted you were rather uncertain as to what to do about your treatment. I just wanted to drop in and say hello. I hope both you and your wife are doing well.

Will you drop me a note and provide an update?