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When I first heard about PRRT from a fellow Nueroendocrine Tumor (NET) patient, my first reaction was very guarded. Years of watching television programs such as 2020 and 60 Minutes as they unmasked unethical foreign charlatans who were selling laetrile in Mexico to cure cancer or promising ALS patients a miracle cure made me very cautious. I began doing my homework while keeping mum to my loved ones about this possible new treatment choice.

After five years of treatment for a very rare form of pancreatic islet cell cancer called a VIPoma, I had been through almost every treatment known to science. I had experienced three years of chemotherapy (5 FU and streptozocin, Adriamycin, and cisplatin with etopocide) including a year wearing a chemotherapy infusion pump day and night and had developed type 4 diabetes from the Streptozocin, requiring daily insulin shots. I had had much of my pancreas removed as well as my spleen and part of my stomach. Over two years I suffered through eight chemoembolizations and had gone through the disappointment of seeing the promising new systemic drugs, Sutent and RAD 001 (Afinitor) fail to stop tumor growth as they caused horrible side effects. I developed hand/foot syndrome from the Sutent and developed agonizing blisters on my feet. I was also one of the 1% of patients who get interstitial lung disease from Afinitor and it made me so sick that I really began to believe I was going to die fairly soon. My options had just about run out at the exact time my colleague told me about this treatment that seemed too good to be true.

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.

I was admitted to Bad Berka on June 30, 2010. Patients are always admitted on Sunday so that they are ready early Monday for treatment. My husband accompanied me up to the ward only to discover that he could not come into the ward. I reluctantly left him at the door and proceeded to a single room at the end of a deserted hallway. As I shut the door on my room I was scared and lonely and had no way of communicating with my husband who would be staying at the beautiful room over the kindergarten 300 meters down the road. We both had computers but found that the kindergarten had no internet service. I must admit that this was one very lonely moment.

Within an hour a nurse knocked on my door and indicated that she wanted me to accompany her to have blood taken. Her English was very bad and my German was non-existent. What I didn't know then was that the nurses with the poorest English are often assigned Sunday and evenings when there is a minimum of interaction with the patients.. While out in the lab area having my blood drawn I heard English drifting out of a nearby room. Once I was done, I followed the voices and introduced myself to two English-speakers; one from Singapore and another from the US. They both had prior experience at Bad Berka and they filled me in on what to expect. I felt much lighter as I left their room and headed back to mine. About 8:30 PM another nurse, this one with much better English, gave me my agenda for the next day and told me to have 2 half liter bottles of mineral water swallowed by 7:30 the next day. I set my alarm and slept restlessly all night.

Monday brought much more clarity for me as the nurse who entered my room spoke good English and could answer my questions. She also told me to eat nothing until my Gallium 68 scan was completed that afternoon. Since chemotherapy had left me with insulin dependent diabetes, not eating all day was very worrisome to me. The day was full of tests... an ultrasound of my liver and a separate one of my heart, a renal scan to determine my kidney function and, after a long wait, a Gallium 68 scan. What I discovered about my diabetes was that if I ate nothing I had no low blood sugar. As soon as I was done with the last scan, however, I quickly went to the cafeteria to eat something.

The rest of the day was very long. I was allowed to join my husband for an early dinner at the delightful restaurant "Station 33" next to the hospital but I was told to be back at the ward by 6PM as Dr. Baum would want to meet with me that evening. My husband stayed down at the cafeteria until 8:45 when I quickly rode the elevator down to tell him that I couldn't imagine Dr. Baum seeing me that night as I had seen him at work at 7AM that morning and a 13 hour day didn't seem reasonable. Having no phone and no way to contact my husband, I was very sad when told to be at Dr. Baum's at 9:30PM. I had to attend the appointment alone. This is when we resolved to buy German phones before our next trip. The meeting with Dr. Baum was wonderful. He did reveal that I had over 40 more tumors that my US doctor had seen and that many were bone metastases. At first this shocked me, but then I realized I had had them for five years but just was not aware of them. Dr. Baum outlined a treatment plan that would include 3 to 4 treatments with the first one starting the next day and the next three occurring about every 4 to 6 months over the next year.

After all that lead up to my Yttrium-90 treatment, it was much less complicated than I could have guessed. I began drinking mineral water early Wednesday morning then was given an IV with amino acids to protect my kidneys. After two hours of the IV a doctor and nurse entered my room with a large square lead box on wheels. They hooked me to a blood pressure cuff and began the treatment, asking every few minutes how I felt. I felt nothing unusual at all, rather than a bit sleepy from the anti-nausea medicine they had administered through the IV. The treatment took about 20 minutes and amino acids continued for another two hours. I experienced no nausea and felt very normal once the nausea medicine had worn off. Since it was my first visit, they kept me in the hospital until Saturday. I felt very well as I made my way home on Sunday and no serious side effects from that treatment or the next two Lutetium-177 treatments administered since then.

At this writing we are planning a fourth trip to Bad Berka in May, 2010 and we have made some changes in our trip planning since that first time. First of all, we bought two German phones at about 20Euros each. This allows us to speak to one another at any time to insure my husband doesn't have to sit around all day not knowing what I am doing or when he will next see me. We purchased the phones in Weimar and they come preloaded with 200 minutes of talk time, plenty for all of our stays. Phones can be purchased in Germany at Vodafone or Tmobile. You just need to take a passport to go with each phone. Also, my husband now stays at a little hotel in Weimar called the Amelienhof that has free parking, free internet and free breakfast as well as being located in the center of town close to museums and restaurants. We have chosen to rent a car on our last two trips, driving from Frankfurt in September and taking the train to Erfurt (one stop before Weimar) the second time. For our next trip we will fly to Prague and drive the 3.5 hours to Bad Berka. Presently I have great hope. A year ago I doubted that I would be alive now. Now I have canceled my expensive life insurance policy that expires in 3 years. We will spend that money on traveling and having fun. I hope that my experiences will help you in your planning.

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