As I researched PRRT on the internet I could find nothing about its use in the United States. Again, I thought "Laetrile and Mexico...don't get your hopes up!" I belonged to a rare cancer online network but my queries about the treatment went unanswered. Then the friend who had made me aware of PRRT sent me an email telling me that the person with whom she had been emailing about PRRT, Josh M., also had a VIPoma, a one in ten million cancer. This raised my interest immediately as I had never met anyone who had the exact same cancer as I.
In this same email my friend told me about two resources for NET patients, the Association of Cancer Online Resources (ACOR) Carcinoid Listserve and the Yahoo Groups site for Islet Cell Cancer. She related that Josh was a frequent contributor on both. I joined both sites and emailed with many questions. Josh, who is one of the co-creators of this PRRT website, immediately answered my email and took the time to have a phone conversation with me. He reassured me that PRRT was a valid treatment for somatostatin receptive tumors and sent me two videos of Dr. Baum presenting in Singapore. As my husband and I drove up the coast of California returning from a vacation for an oncology appointment in Seattle, I watched those videos as my husband drove. After just a few minutes we agreed that this treatment might, in fact, be real. The next day at my oncologist's office I asked if he had heard of the treatment. He said he hadn't but that he was attending the 2010 American Society of Oncology meeting that weekend and would explore the treatment. Within a week he confirmed that this was a viable choice for someone like me who had tried and failed at most of the known treatments for NETs. The only obstacle was to get insurance coverage and see if Dr. Baum would accept me as a patient.
Next, I emailed Josh to ask him how to contact the doctor and he copied his response to Dr. Baum. Within a day I had an email from the doctor telling me to get a new Octreotide scan and to send all of my records to him in Bad Berka, Germany. Once it was established that my tumors were receptive to Octreotide an appointment date was set for consultation and treatment in Bad Berka. I simultaneously began requesting preauthorization for the treatment from my insurance company. I was quickly turned down by them but was determined to get treatment as I appealed their denial. I am still fighting to have treatments covered but I decided that I was not going to let my insurance company determine my future.