It was in September of 2010 when I finally decided to have PRRT. It had been 5 years, almost to the day, since my original diagnosis with Stage 4 NeuroEndocrine Cancer, A.K.A. Carcinoid. I knew quite a bit about the disease when diagnosed because my Father, Thomas, had recently lost his 11 year battle with Neruoendocrine Cancer only a few years earlier at age 73. At 41 years old, this was the last thing I expected.
Early on in my post diagnosis research, I learned about PRRT. My doctors at the time advised me against it which I later learned was likely do to their lack of knowledge about the treatment. After two major surgeries, 5 cycles of Chemoembolization and 5 years on Sandostatin, the tumors returned, and I knew it was time for PRRT. My only other option was Chemotherapy which I knew to be ineffective against Neuroendocrine Cancer.
I knew the PRRT treatment at Bad Berka in Germany was one of the most expensive options, but I was intent on learning the reason. After sending my latest MRI, Octreoscan, blood work, pathology, and history to Professor Baum at the ZentralKlinik, he wrote me to say that I was a candidate for treatment. Since I had already watched his Singapore lecture detailing the technical aspects of the treatment, I had only a few questions that he answered during a Skype telephone conversation. I instantly liked Professor Baum. After speaking with him for about 20 minutes it was clear why he is a professor. He took the time, in laymen's terms, to explain all of the different radioisotopes available, how they would be used, and most importantly, all of the precautions taken to prevent Kidney and Liver damage. Professor Baum gave every answer just as he would with any medical student. In the end, I decided on Bad Berka because, although the treatment was the most expensive, it was clearly the safest protocol and the results were well documented. More on costs later.
Having done quite a bit of international travel for business I was not apprehensive about traveling all the way to Germany. I knew that most of the German people in the major German cities spoke English and so did most Doctors. (English is the standard language of medicine) I planned our (my caregiver and I) first trip, one week before Christmas, from Phoenix AZ, through Charlotte, NC, and finishing in Frankfurt, Germany. The flight was 1/4 US military due to the nearby base in Ramstein, which made us all feel very safe. We stayed overnight at the Courtyard/Marriott hotel near the airport (A 35 Euro ride).
I'm not sure we would do that again due to the distance and cost from the airport, but it was a wonderful place to stay with a large outdoor mall decorated for Christmas, a large indoor pool and spa, and a train station. Perfect for spending a couple of days recovering from the 9 hour jet lag. The next day we made our way by train back to Frankfurt Airport where we met our train to Weimar, Germany. Only one train change was necessary in Erfurt, Germany. The train system in Europe is very nice, clean, and competitively priced against air travel. We had reserved seating in the first class section with plenty of legroom on clean, quiet, comfortable and very fast trains. When traveling in the heartland of Germany, there is a language barrier. Few German citizens speak English. But, the DB Railway employees are multilingual and are actually helpful in getting to the right platform.
Upon arrival in Weimar, we walked to the first taxi in the line and simply said 'ZentralKlinik'. About 20 minutes and 25 Euro later, we arrived. The reception desk was ready for us with our reservation at the Hostel which is also on the Hospital grounds. With a cost of 35 Euro/night, we were pleasantly surprised how nice it was. A Kindergarden is downstairs so my caregivers that stayed there for the week were up early during the day.
The next day we walked the 1/4 mile (10 min) from the Hostel to the main entrance of the Hospital and to the admitting area where I waited my turn to check in. The friendly admitting clerk was able to confirm that the payment wired the week prior had arrived. From there, only a few papers needed to be signed before heading up to the Isotope Therapy ward on the third floor. The access to the ward is tightly controlled. No visitors are allowed in at any time. I was able to go outside of the ward during the two preliminary testing days, but was not allowed off the ward while treatment was underway or for the following two days.
The next day was 'test day'. Blood work, Kidney Function tests, Electrocardiogram, and a special GA-68 PET CT. A very special test that found all of the Neuroendocrine tumors, even several that were previously undiscovered using previous US testing methods.
The following morning (Tuesday) I had a consultation with Professor Baum. The results of all of the tests were presented along with his explanation of what every slide of every test meant. He answered every question and then declared that it was a 'virtual guarantee'that he will eliminate most or all of my tumor load with this treatment. I wondered just how he knew that since most of the doctors in the US were great at saying 'you can try this', or 'I don't know'. But Professor Baum quickly reminded me that with the experience here in treating thousands of Neuroendocrine patients over 14 years, he was able to provide that level of assurance based on the test results. I could not have been happier and couldn't wait to get started.
Later that same day, treatment began. It is a simple procedure, really. I sat in bed and received premedication with fluids and amino acids for kidney protection. This was followed by a special infusion of LU-177 isotope from within a lead box that took only about 20 minutes while your blood pressure in monitored. From here begins the 48 hour lock down period where you are not to leave your room or the ward. I was very radioactive at this point and exposure to other people, especially young children, could potentially be dangerous to them. I am told that most people experience few if any side effects from the therapy. Side effects depend on the Isotope used, the dose, and ones own individual medical condition. In my case, the side effects began on day three which included nausea and overall malaise. It made traveling back to the US somewhat unpleasant, but I found a mixture of common anti-nausea and anti-anxiety medications got me through.
On Christmas eve I began my journey back to the states. Train to Frankfurt, overnight in Frankfurt, plane to Phoenix with one stop to clear customs in Charlotte, NC. This turned out to be one of the most entertaining part of the entire journey. The amount of Valium I was taking combined with the anti-nausea drug had me a little tipsy. So, I elected to use a wheelchair. Upon entering the customs hall in Charlotte, the radiation I was emitting triggered the dosimeters on the belts of every customs worker within 50 feet. They quickly figured out I was the target and escorted me off to another lobby where I asked some questions and presented a letter given to me by Professor Baum explaining the treatment and the Isotope used. They were pretty nervous at first, and it was actually quite comical. But they calmed down after they verified my story. After about an hour, I was released from Customs and proceeded to TSA for screening prior to boarding the flight to Phoenix. I walked through one of the new Backscatter x-ray machines and fuzzed it out completely. It was suddenly rendered useless and the q-line had to be re-routed to the only other remaining machine. TSA had no idea what had transpired in US Customs nor did I tell them anything. Due to the failure of the backscatter machine, I had to be manually searched. Following the completion of the search I observed a team of 5 technicians taking apart the x-ray machine I had just fuzzed out, trying to determine what the heck happened to it. I suggested to my travel companions that we might move along quickly before they figure out it was I that broke it.
I spent the following three to five days in Phoenix taking it easy. The nausea and malaise continued during that time, but was controlled with simple anti-nausea medication. Gradually my appetite returned along with my activity level. Within two weeks I was feeling 100% again. My local Lab drew blood every two weeks following my return and my local oncologist monitored the results. I experienced only mild anemia which resolved itself within 3-4 weeks. 3 months post treatment, both my Liver function and Kidney function actually improved to a level better than before treatment began.
Upon returning to the ZentralKlinik in April 2011, the GA-68 PET CT results confirmed that the first treatment had reduced my overall tumor load by 50%!! Improvement was seen in all areas including liver mets, bone mets, and lymph nodes. A roaring success. Professor Baum declared that my second treatment (this time with Y-90) would be the last treatment I would need. I was to return to the ZentralKlinik in October 2011 only for tests. A complete remission is expected. In over 5 years battling this disease, the news could not have been better.