Hi Teresa. Thanks for the nice welcome! As a result of elevated Alk P in my liver last December, and many diagnostic procedures since (ultrasounds, MRIs, biopsies, Pet Scan) I was diagnosed with Stage Four, Grade Three NETs, well differentiated, and breast primary (making it REALLY rare, as if it was not rare enough already).

In February, I began a course of treatment with Letrozole pills daily and Lanreotide injections monthly. I had no symptoms, and no side effects from the meds at all. Last month I went to Mayo and had a PET/MR and met with a Neuroendocrine specialist. The fancy new test showed much more clearly the extent and progress of the NETs. My tumors did not have the right receptors to use the Lanreotide, so we’ve stopped that, as well as the Letrozole, which was also ineffective. This week I began with the Cap/Tem . I’ve just had four days of the Cap, and the second afternoon I was nauseous…that has continued through today…day four (of a planned year of both meds). I have Zofran to take when I add the TEM on day 10 of the cycle. I’m sleeping quite a lot, too!

I am (was) a VERY active 76 year old (walking 5 or six miles a day, water aerobics three times a week, weight lifting twice, biking, etc.) , but is is certainly going to have to change if I can’t control the nausea. Hence my request for hints, tips, or advice about that from those in front of me on this adventure.

I have the breast tumor, lots of NETs in my liver (and nowhere else in my abdomen), one on my shoulder, several in my spine, one on my left femur head, and a few tiny ones in various but few lymph nodes.

So there is my story so far. Thanks for any advice!