First, I am not a lungnoid. I do know of many NET patients who are. A lungnoid is someone whose primary tumor originated in their lung or bronchial system. We just recently lost our first support group member, she was a a-typical lungnoid. It was sad. One of the nicest ladies....
I received an email from the Neuroendocrine Cancer Awareness Network about their new Lung Neuroendocrine Tumor Support Community. This community is part of Inspire, which also has a PNET (pancreatic) support community.
LungNET.inspire.com
I'm having trouble with their website today so I hope the link works.
My Christmas and New Years were pretty uneventful. I did catch a cold and it really took me down for a bit. I'm just now feeling better although my ribs are killing me from coughing so much!
I' had a cervical epidural injection of steroids in my neck almost two weeks ago. It was one of the easiest procedures that I've had. I hope it helps. My neck is worse off than I thought was. An MRI showed major stenosis, bone spurs, arthritis, flattening of the spinal cord and a herniated disk. Argh. It feels better now but I'm also taking Celebrex.
I have a triple phase CT scan on Friday. Then meet with my new Oncologist next Tuesday for the results. I did get the results from my CgA and Pancreastatin blood tests. My CgA dropped another point to a 2 (normal is 0-5), which is great but my pancreastatin went up 90 points! Its above normal. I don't know why the CgA went down and pancreastatin we up but they do say the pancreastatin is much more sensitive (better) a test. I know that it's the "trend" that matters. Not one blood test result.
I'll update after my appointment next week!
I'm not convinced I have found the right carcinoid doctor for me. who handles your care? feel free to email me privately. kitchen at ubtanet.com I'm travelling to SLC from rural Utah.
ReplyDeletethank you
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