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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@djsutton205

Just thought I would contact this group to say Hi. I was diagnosed with NETS about a year ago. Before that, I was diagnosed with MEN1, a condition whereby there are tumors on many of my hormone-producing glands—parathyroid, adrenal, pituitary and pancreas. I have had a number of surgeries to remove tumors on the parathyroid and adrenal, but the tumors on my pancreas have spread to my liver. Hence the PNET diagnosis. I have been injected with Lanreotide on a monthly basis since my PNET diagnosis and my quality of life has not changed, although I have one minor side effect which is manageable. Most recently my oncologist has suggested that I take Afinitor along with my injections. Side effects can become increasingly bothersome. I have so many questions and concerns, mostly regarding my quality of life. Has anyone out there had an experience with the Lanreotide-Afinitor combination and did you have serious side effects? And in general, how do you deal with this seemingly overwhelming diagnosis?

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Replies to "Just thought I would contact this group to say Hi. I was diagnosed with NETS about..."

I have been on Octreotide shots for several years and also took Afinitor for a couple of years. The worst side effect I had was mouth sores especially if I ate acidic foods BUT my pharmacist in the Cancer Clinic suggested I use liquid Dexamethasone on them when I got one of them. It so worked for me and was a true blessing he suggested it. This was pre Covid so I’m not sure now if you can still ask for it (prescription) since they have also used it for Covid treatment. Again, this was oral and it only took a dab on the spot so a bottle lasted forever. Sometimes my appetite wasn’t so great but never really a problem for me.