Updated posted by Andrew E Dilldine 19 days ago
Many of you have asked - I got my results back from the N.I.H. clinical trial. All of my biomarkers show that I have tumors in my liver, but they aren't showing up on the scans. Anything under 4 centimeters doesn't show up. N.I.H. wants me to come back soon so that they can try to get my Carcinoid Syndrome to flare up so they can take blood and do more scans, therefore resulting in being able to locate the tumors on the scans. 13 other people besides myself are their guinea pigs for their technology. Unfortunately, while on my last trip to Washington, my Carcinoid Syndrome flared up so badly that I passed out from dehydration. It was a very scary time, alone and in a Maryland E.R. Until they can find my tumors or I can come up with enough funds to go to Europe for treatment, I have to just continue on with treating the symptoms and not letting them take me. In Europe, they are 15 years ahead of the United States. They have more peptides and isotopes, so they are able to detect and treat faster. (Where the U.S.A. only uses 2 to 3 Isotopes, Europe has over a dozen.) Out of N.I.H.'s trial, as of now, 13 people haven't shown on scans with biomarkers in blood. Thank you, everyone, for your support!
Updated posted by Andrew E Dilldine 1 month ago
Hi, everybody! For those of you who didn't know, I was accepted into the clinical trial that I described in my previous update. A week ago, Amy and I traveled to the N.I.H. (National Institutes of Health) Center (across from Bethesda Hospital) in Maryland. I did a week's worth of tests and scans, and complete results are still pending. I am flying back there this coming Monday to consult with the head of the department to get a care plan set up. And finally after six years, know where I am going with all this. Over the last few months, I cannot thank enough people who have helped us with their overwhelming support. It's very touching and I see God's love in so many of you. Also, I promise I will beat this and pay it all forward down to the penny. God is great. God Bless you all!
Updated posted by Andrew E Dilldine 2 months ago
Hello, everyone. My medication, Octreotide, has been helping greatly. My symptoms have been reduced tremendously. It's almost reduced my night sweats completely, has minimized the frequency of G.I. issues, helps me breathe better, reduces flushing, and more. I have actually had relief for the first time in a long time. And sadly to say, after hours of phone conversations and correspondences with my insurance company, they have decided to stop paying for it. Even though they have documentation from four different doctors as to why I need it, what I have left (about 6 days worth) is all that I'm going to get. It is too expensive to pay for, so when I'm done I'm done. On a brighter side, I came across a clinical trial for a 68 Gallium P.E.T. - C.T. scan. They are used in Europe and they're trying to get F.D.A. approval here in the U.S. If I'm selected to be a part of the study, I'll be traveling to Bethesda Hospital near Washington, D.C. Also, Amy lost her job this past week. Please send prayers. Thank you to all of you for your support!
Created by Andrew E Dilldine on December 19, 2013
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Andy, I don't know if you remember me. We went to the same school as children. I'm so sorry for what you and your family are going through. I'm praying for your family. Best wishes...
posted by Katrina Isham 3 months ago
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