Back in 2000-2001 I could tell that something wasn’t quite right. I just didn’t feel well. I was active, working hard, doing all of the things I enjoyed doing with my family and friends. Still, I had these episodes where things were just out of whack. I would turn beet red after a meal or when stressed. My heart would pound so hard that the skin felt tight on my head. I had some horrible bouts of diarrhea.
Reluctantly, and after some prodding, I visited the doctor. Maybe it was irritable bowel syndrome. Maybe it was my hiatal hernia acting up (something I’d been diagnosed with 15 years prior). Maybe it was stress – literally all in my head. The diagnosis and advice changed with every visit to the doctor. They gave me the usual gamut of blood tests, but all results were normal. Try not drinking coffee for a month. Try not drinking alcohol for a month. Exercise more. Change your diet. See a psychiatrist. This routine went on for months, then years, but nothing changed.
By 2004 I was starting to have some really horrible stomach cramping. One weekday after lunch the pain brought me to my knees. I called from my office to our receptionist and told her I needed a ride to the hospital. In the ER they decided it was probably food poisoning. The heavy narcotics they gave me for the pain nauseated me and made me feel worse. The pain eventually passed, but still something was very wrong.
After several more months, a few more debilitating bouts of stomach pain, and more trips to the doctor, I was referred to an endocrinologist. She could plainly see that something was very wrong, but had no idea what. Her approach was to throw just about every unique and rare test at me she could and see what showed up. Lo and behold a 24-hour urine test, called a 5-HIAA test, spiked a very high result which was many times beyond the normal range.
I’ll never forget the phone call from that endocrinologist. It was July 6, 2005. It was the day I learned I had cancer.
There is no cure for carcinoid. Of course the first thing you do is look up your disease online, where you immediately find how rare it is (about 2 cases in every 100,000 people) and what the life expectancy is (about a 30% rate of survival five years after diagnosis with distant metastasis). Yikes!
They performed CT scans, a liver biopsy, an endoscopy, a colonoscopy, and several other tests. It was very sobering the first time we saw a scan of my liver that was about 40% full of cancer. They did do the right thing by putting me on a monthly injection of Sandostatin LAR, but that’s only considered palliative (treats symptoms) not curative. They do tell you that at least carcinoid is a relatively slow-growing cancer. Believe me, that’s little consolation. Kaiser’s approach was basically “wait and see.” We carcinoid patients have a different term for it: “wait and worry.”
It turns out that I probably had this tumor in my gut for many years, which eventually metastasized to my liver. Only after it has grown in the liver for a few years do you start to have symptoms (carcinoid syndrome). Remember those symptoms didn’t manifest until 2000-2001, so who knows how long this stuff has been lurking in me. After diagnosis, and a few years of disease progression, intermittent extreme abdominal pain, and no real change you reach a point where you realize that you have to take matters into your own hands, be proactive, become your own advocate. So did I rise up and take control of my disease? Well, no, but thank God for my wonderful wife, Kathy, who was a woman on a mission. Do not get in her way!
While I sort of compartmentalized my disease and tried to go about my life, my wife kicked into high gear. She joined support groups, had us listening to webinars by carcinoid experts, took us to meetings, and networked like crazy. What we found out was that there are only a small handful of true carcinoid experts in the country, and if you want progressive care you have to see one of them. After listening to several of those doctors in person and online we chose Dr. Edward Wolin at Cedars-Sinai Medical Center in Los Angeles.
Dr. Wolin didn’t waste any time. After several diagnostic tests in early 2009, he quickly prescribed a course of treatment to prolong my quality of life. Working with a team of doctors, the first thing was major abdominal surgery in April 2009 to remove my primary tumor. Dr. Wolin and his team were convinced that my primary tumor would be found on my small intestine, which it was. A bowel resection was performed, removing 18” of my small bowel which included the primary tumor. They also removed my gall bladder, some lymph nodes and other cancerous tissue from my abdomen.
It turns out that almost all of that abdominal pain was caused by my primary tumor which had grown to encircle my small intestine like a rubber band, causing partial bowel obstructions and hence the intense pain. After recovering from surgery my quality of life was much improved. Unfortunately I still had a liver full of cancer, and other tumors elsewhere in my abdomen. So Dr. Wolin’s next course of action was to prescribe a couple different types of liver therapy to try to reduce some of those tumors.
In the fall of 2009 I had two rounds of SirSpheres. This is an internal form of liver radiation where they run a catheter up your femoral artery into the tumors in your liver and deliver irradiated microscopic beads right into the tumors. While this proved somewhat successful, I also had some complications when some of the radiation leaked into my stomach, causing a 3-month stomach ache that was pretty uncomfortable. That was followed be a round of hepatic artery chemoembolization in early 2010. While similar in delivery to the SirSpheres, this treatment cuts off the blood flow to the tumors in the liver, starving them of nutrients and oxygen. Again, this proved somewhat effective.
All the while Dr. Wolin had me undergoing regular MRI’s, CT scans and other tests. What the imaging showed was the development of some new tumors along my diaphragm, between the liver and right lung. He was concerned. Obviously so were we. This was not an area in the anatomy where they could easily cut me open to remove the tumors. We had to try something else. After a failed attempt in 2010 to get me enrolled in a clinical trial for Pasireotide (which had shown some promise in controlling tumors in carcinoid patients) Dr. Wolin determined that the best course of treatment would be PRRT.
Peptide receptor radionuclide therapy has been performed in Europe and other places around the world for several years, with hundreds of patients treated successfully. At its simplest, this is an irradiated drug delivered intravenously. It travels through your body seeking out tumors and binding to them. The radiation then destroys the tumor. Typically the treatment is delivered four times, with each treatment being six to nine weeks apart. The only location where this treatment is available in the U.S. is at Excel Diagnostics in Houston, and has only been available there since 2010. PRRT is not FDA approved and is not covered by insurance.
My first round of PRRT was in August, 2011, and my last therapy was in January, 2012. Everything was done on an outpatient basis. Again, there is no cure for carcinoid. This is a treatment which has proven very successful in carcinoid patients (some of whom I know quite well) to significantly reduce tumor bulk and prolonging the quality of life. The hope is for three years or so of cancer free progression, after which time there will hopefully be an even better treatment, or perhaps PRRT will then be covered by insurance.
Because PRRT is not FDA approved and not covered by insurance, U.S. patients have to pay for the cost of treatment out of pocket. The cost is approximately $15,000 per treatment. Add to that the cost of airfare, hotels, meals, car rental and multiply by four and we faced a total cost of over $75,000 for this therapy. I am thrilled, humbled and so grateful to report that with the support of family, friends and our local community we were able to raise $80,000!