First off, I would like to thank EVERYONE! 2,683 people have visited my page - therefore, that many more people have awareness of Carcinoid Syndrome and how it can change one's life.
The latest with me is that I'm working and negotiating with my insurance company to get into see Dr. O'Dorisio at Iowa State. He is one of the four leading specialists for my illness, and his expertise is awareness of flushing, and the ability to locate tumors based off the location of one's flushing. From other patients I know and documentation, my ultimate goal is to travel to Germany for treatment. My Glucagon level is very high, which indicates that my tumors will likely be in my pancreas and liver. The problem is that they aren't showing yet, and by the time they do, it won't be good. It's a weekly fight, getting my medication from the mail order pharmacy, which has made my syndrome worse. Lots of flushing, G.I. issues, and stress.
We do sincerely wish to thank every one of you who read this for your prayers, your support, your donations, and your thoughtfulness. The generosity and love WILL be paid forward. Thank you, and God Bless!
Carcinoid Syndrome = flushing!
Adysan is fair skinned, and I'm flushed!
Since you last heard from me, I have been battling kidney infections and a kidney stone. I was admitted to Ohio State and have seen several specialists. I am in the process of negotiating with my insurance company to seek out-of-state treatment, in either Iowa or New Orleans. I can't thank everyone enough who has helped me and my family, in the many ways that we have received support. God Bless you all! you have all shown His love! - Andrew.
I love her
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!
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!
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!
It's been a few weeks since I've done an update. For those of you who don't know, I recently spent a week at O.S.U. Medical Center (excellent hospital!) due to sickness and bad symptoms from my tumors. This was the result of not having the medication my doctor wanted me on and my insurance company fighting to pay. After several days my doctor decided to not give them the choice and began me on the drug. The insurance then agreed to 30 days of the drug. Not sure where we will go from there. I am currently giving myself injections three times a day of the drug, which is helping my G.I. symptoms and giving me more energy. One downside, though, is the painful cramps which I have been prescribed yet another medication to ease those. I want to give another huge thank you to all of you who have helped us out through donations and other ways - it helped out tremendously - Amy was able to drive several times to see me, and some bills have been paid. So thank you to all of you, so much, who have helped us and who have shared this story. It has made many people aware of a disease that so little is known about to most. Please say some prayers - this Friday I have another colonoscopy, where they will be searching for tumors and polyps. Thanks again, everyone, and God Bless you all.
Hello everyone. I hope you all had a great Christmas! It's amazing that we've had over 500 people visit my page and now are aware of Carcinoid Syndrome. My holiday experiences were memorable in so many ways - watching my girls on Christmas morning was very joyful but my symptoms were really bad. On Christmas Eve, our church met up and handed out boxes of donuts all around town. Amy and I went to Atrium Medical Center (Middletown Hospital), the police station, fire department, and Urgent Care. It was awesome to show God's love and very importantly, teach it to Adysan and Abygail. Sadly, our insurance has denied my prescribed medication for the 2nd time. I have one more appeal left. I hope you all have a safe and very Happy New Year! May peace be with you, and to those who have made donations, I can't thank you enough. God Bless you.
My name is Andrew. I am 36 years old, with a wife and two young daughters. Adysan is 6 and Abygail is 3. In 1998 I was diagnosed with a parathyroid tumor which was removed. For ten years after that, I went with no health issues. Sadly, seven years ago, just months after marrying my beautiful wife, I began having problems ranging from kidney stones to severe night sweats (soaking my side of the bed) to severe diarrhea to facial flushing to blood infections (I have been septic 3 times which almost ended my life).
Mayo Clinic, I.C.U. for 4 1/2 weeks - septic. 887 miles away from home.
Good Samaritan hospital / ICU Dayton, Ohio. Bad kidney infection (almost lost right kidney). They took out the left lymph node to see if i had Lymphoma - it was just swollen. Infectious disease doctor said she has never seen anyone sweat like me in her 20 years as a doctor. I was in for three weeks, out for two, then back for two.
Over the years I have tried hard to be super DAD not super sick .
MY GIRLS ARE MY WORLD
When my symptoms first started I had numerous (over 50) visits to the emergency room for kidney problems and my G.I. issues. I spent 6 months admitted in local hospitals. With no diagnosis, I went to the Mayo Clinic in Jacksonville, FL in 2010. I was there for 11 months living in a hotel while getting treatment and testing. My final answer after all of that, after seeing many of their doctors and specialists, was that whatever I had was very rare and they just couldn't give a final diagnosis. They said that whatever I had needed to grow to be found. Over the last 6 & 1/2 years I have passed 86 kidney stones. I have had over 12 stents placed in my kidneys. They had to balloon the tube on my right kidney to expand it because it was scarred so badly due to the stones. I also had many urinary tract infections. Over the years, I have spent over 300 days in hospitals including intensive care unit treatment. My come to Jesus moment was when a Mayo Clinic doctor told me that he thought I may not make it through the night due to sepsis.
Please go to this link; it explains everything very well: www.webmd.com/cancer/features/what-is-carcinoid-syndrome
or look up, New york times my rare tumors-deceptive and deadly
More recently, I have been a patient at the Ohio State Medical Center. Where on some blood work, it finally showed that I have elevated hormone levels that are consistent with a rare tumor called Carcinoid. As there tumors advance, they produce what is called Carcinoid Syndrome. It is when the tumors produce too much hormones in your G.I. tract and causes severe cramping, discomfort, night sweats. Any time that I eat, just after a few bites, I begin to cramp and have to use the bathroom where it's violent diarrhea. Carcinoid tumors can be very small, like the size of a grain of rice, and are very hard to locate. They cause havoc to one's body. They are known to spread to other areas of the body, like the lungs, kidneys, liver, or heart. Some people - such as Steve Jobs from Apple - and Dave Thomas from Wendy's - had and have passed away from Carcinoid tumors. 40% of people with tumors (like me ) there tumors don"t show up on scans . I have friend who had 3 tumors show up on scans, but when she had surgery there was over 30 .
Abygail weeks ago
If my family's luck wasn't bad enough, Abygail (our 2 year old) is epileptic and has had multiple seizures. Just her medical bills and monthly medication costs would have sent us into bankruptcy, then add my own medical bills and medication costs, and my wife and I were forced to file Chapter 13 bankruptcy in 2011. Even with having good insurance through my wife's employer, we had one bills alone from the Mayo Clinic for $73,000. We owed $350,000 in my medical bills.
Abygail after big seizure and all the tests. MRI's light flashing test.
Just in the past 3 months, my doctor started me on a new medication which has helped ease some symptoms. I haven't made any new kidney stones in the past 2 months. In the past, it was an average of 3 - 4 a month. Now my doctor wants to start a new medication which is a twice - a - day injection that would help my symptoms even more and take away the flushing and sweats. (This would make my wife happy, too, that the bed isn't drenched in sweat.) For this version of medicine, the cost is over $6,000 a month and I am currently appealing my insurance company's denial statements. There is also a better route to take where I'd only have an injection twice a month, but that is over $10,000 a month. Weeks ago during a colonoscopy, precancerous polyps were discovered. In January, I have another colonoscopy where they will be searching for my primary tumor and other secondary tumors.
With me being ill, it is hard enough having my body shut down but seeing my family get put in financial ruin and even making it hard for other family members who have drained their own finances trying to help us, it has been very hard to deal with. We are at a huge risk of losing our home which we worked so hard to purchase 6 years ago, and have no way out of it. We feel we are in Pandora's Box from everything our family has endured - our credit destroyed by bankruptcy and bills, my inability to provide financially as I need and want to, dealing daily with my medical problems and symptoms which are getting worse and worse. And the worst is yet to come, medically.
The good out of all of this is that I have become very humbled for what I have. I have reached out to God more than ever before. My family and I have joined a wonderful church - Vineyard of Middletown, OH - which is a branch of Vineyard Cincinnati - and we have a strong connection of church family / friends and community. We have even taken a Dave Ramsey Financial Freedom course through the church to help us manage our money, because it has been very tight financially. My goal is to not leave any debt to my wife, Amy, and our daughters.
My friends told me to start this page and I am skeptical - I have never reached out in this way before. Donate if you want to, and I promise that I will pay it forward. I want to be an advocate for Carcinoid tumors. So even if you are someone just reading, you are now one more person who is aware of this deceptive and deadly disease that so much is unknown about to most people. And that to me is it's weight in gold.
God's plan for me is unknown, but what I do know is that I married the love of my life and I have to precious and beautiful little girls and I am truly blessed. I give all of this to God. It is in His hands.
Thank you for reading.
My new Dr.