PRRT Treatment at Bad Berka Experience
February 2016 through November 2016

First PRRT Round – February 2016
Second PRRT Round – May 2016
Third PRRT Round – August 2016
Fourth PRRT Round – November 2016

For background information only, I was diagnosed with neuroendocrine cancer (Gastrinoma) with extensive liver metastasis at the age of 44. Like most NET patients, the diagnosis was made late and other than some occasional heart burn symptoms, I was otherwise asymptomatic and remain such through today. As with everyone who hears the words cancer, the wind was knocked out me and the immediate realization of my mortality came front and center to my world. Some would say that because I have been in medicine for over twenty years and am currently an Emergency Nurse Practitioner that my knowledge base would somehow be a benefit, but believe me when I say, it is a very sharp double edged sword.

Prior to diagnosis, the nuclear medicine techs allowed me to observe the live feed screen of my Octreoscan and it was at that moment that I knew, but remained hopeful. After the Octreoscan was read by radiology to be suspicious, I underwent a CT scan and being friends with the CT tech, I was allowed to look at my images within minutes of having undergone the CT and it was at that moment upon seeing how extensive the liver metastasis was that I realized how bad the situation was. And so began the search for treatment and extensive research. The other side of that double edge sword was a benefit when it came to fully understanding the intricacies of reading medical research and having the resources of a university medical library at my disposal. Having already been deemed inoperable by several surgeons to include a very expensive consult at MD Anderson, I like so many others before me had determined that I was not willing to accept the status quo and that PRRT therapy was most definitely in my future. The information gathering continued and this led me to the ACOR boards, prrtinfo.org and Gary Murfin.

Being the proactive type, I was also not going to sit idly by and let someone else coordinate my medical care and I still refuse to do that. After establishing care with oncology and being started on Octreotide LAR injections, I arranged a consult with a top NET surgeon. Although surgery was discussed to remove the pancreatic primary tumor, there was no surgery that could be done on the liver due to extensive disease. Like others, I had read the research that indicated removal of the primary tumor slowed progression, but the study itself is limited. The surgical options discussed may or may not have involved a Whipple procedure. In light of the fact that this was a non-curative surgery coupled with my own medical knowledge & understanding of post-surgical complications, especially with a Whipple procedure, I deferred this route of treatment and fully pursued PRRT against my surgeons wishes.

Luckily, I have an amazing group of friends, family and an employer who had collectively put me in a financial position to pursue this therapy. So after reading experiences of all the European PRRT centers, reading extensive research articles and talking to Gary, I centered on Bad Berka despite them not being the least expensive because of my belief in their individualized model, nuclear medicine screening modalities and overall reputation in the field. I self-referred with the blessing of my oncologist by contacting Bad Berka, filling out the required paperwork and sending all of the requested scans and medical records for review. This process was painfully slow and took about eight weeks to get a response and get set up with an initial consultation date that was another eight weeks away (February 2016).

Having never been to Germany, I dove into Duolingo to cram as much German into my head as was possible and please note, that wasn’t enough. Many friends told me not to worry about speaking German because so many people speak English. This is both a true and false statement. In larger cities such as Frankfurt or Berlin, finding an English speaker is rather easy, but travelling to Weimar and Bad Berka, formerly East Germany less than 30 years ago, this becomes a bit more difficult. Regardless, there are some and I repeat some English speakers, so don’t let that aspect alone dissuade you.

Flight arrangements were made, rental cars paid for and an Airbnb obtained. My wife was travelling with me and from reading other experiences with the Kinder Garten at the hospital, I elected to have my wife more comfortable than I knew I would be. For reference, there are many Airbnb apartments for rent in Weimar that are very reasonably priced and include WiFi. We averaged about $40 US per night for the Airbnb compared to many of the nicer hotels in Weimar being closer to $200/night. Weimar is also only a 15-20 minute drive from Bad Berka. We also made our flight, car and accommodation bookings to arrive in Weimar three days before my scheduled check in and departure for two to three days after therapy. I would recommend doing the same if possible so you can explore the area a bit, which is beautiful, finding the hospital and lowering the stress/anxiety a bit.

Onto the trip to Germany which is a long flight from the west coast. Arriving in Frankfurt being effectively jet lagged was and will remain an experience unto itself. We made our way to the rental car area and obtained our rental car. By the way, don’t get suckered into the insurance if you know you are covered through your primary car insurance or insurance is provided by your credit card company. Something to find out before hand and more on this later. Once the rental car was obtained and the destination punched into the navigation system, off we went on the autobahn to Weimar, which depending on how fast you are comfortable driving, is a 2-3 hour drive. The drive to Weimar is generally pretty straight forward and getting into the Airbnb was an interesting event, but went smoothly. Both my wife and I make it a habit to stay up as late as we can and then sleep for about 12 hours to get our internal clocks set to German time. For the next few days, we explored the area, found the hospital and tried to enjoy our time together.

Checking into the hospital on a Sunday afternoon if you have to do that, needs to be done by about 3:00 PM. They do not have the registration / finance clerks there after 4:00 PM. Luckily, I had my days confused for check in for the first visit when I showed up around 4:30 PM, otherwise I would have had to wait to register early the following morning. Regardless, the check in process is daunting because of the language barrier. Going to the front kiosk and providing your name will start the process and you will need to take a seat in the immediate area. You will be called into a glass office and start the process and each time I have gone, it was with limited English speakers. This is where you will be paying a deposit based on the estimated costs with an estimated total. You can pay in full at that time or if you’ve made a wire transfer prior to arriving, it should be reflected on this initial paperwork. Once checked in, you will be told to go the ward with broken English instructions on how to get there, which won’t make sense.
Getting to the ward itself… Remember that you need to correlate my directions with entering through the main entrance of the hospital. Once you leave registration, you will find the elevators and take them to the third floor. Once at the third floor and overlooking the balcony back towards the main entrance, you will turn to your right and go towards the glass door that you see. Enter that door, walk into the stairwell area and there will be a glass door to your right. Go through that door walk a short distance and turn down the hall to your left. You will come to the nuclear medicine floor doors which are locked. Push the button on the intercom and someone will come to get you. Depending on which nurse or aide comes to get you, will determine if English is spoken well. Regardless, all of the nurses and aides are awesome and most speak some English. Keep in mind that this is a point where you will say goodbye to family members, as they cannot come onto the ward.
Once on the ward, you will be taken to your assigned room and provided paperwork to complete and likely labs to be drawn to include nose, mouth and rear end swabs for testing. The swabs are to check for antibiotic resistant bacteria and you get to do your own rear end swab. After this it is not uncommon to just be left in your room with little explanation of what is come, but you will be provided with a schedule of your stay and an electronic fob to unlock the ward door. The schedule shows the tests, tentative times and directions to the testing area. The rooms are Spartan and unlike almost anything you’ve seen in the United States. I hope you brought your computer, a tablet or some kind of entertainment to occupy your time, as well as your cell phone (more on this in a bit). Your most likely next interaction will be an evening meal service that is shocking to say the least. It generally consists of some bread, a piece of fruit, mystery meat and a slice of cheese. After the evening meal service, a nurse will generally check on you once and that’s it for interaction on day/evening # 1. I learned by my third trip to Bad Berka that you can sign yourself off of the ward and don’t have to actually sleep in the hospital with the exception of the 48-72 hours after treatment (more on this in a bit).
The following day you will be directed to pick up your medical record from the nursing station and make your own way to the required testing (i.e. ultrasound, echocardiogram and PET CT). I can’t provide you with all of the directions, but unlike in the US, the patient is expected to take an active role in their care including walking if possible to their testing area. I’ve often thought about drawing a map for new patients, but fear it would be too complex. At some point on your first day, the enormity of everything from the hospital, testing, language barrier and so much more becomes pretty strong. In my case, it was overwhelming and although I don’t suffer from anxiety, I was very anxious and felt like I may have made a bad decision. Luckily I was able to skype with Gary and my wife, who talked me off of the proverbial ledge. Gary is a wealth of information to include knowing when other Americans are on the ward and doing what he can from across the world to introduce you. It was during my first visit that I met Josh Mailman who was also on the ward. Each day of testing becomes a little bit easier and the day of actual PRRT treatment is pretty straight forward.

Prior to receiving your treatment, you will meet with Dr. Baum, who will discuss your case with you and treatment plan based on all of the testing. This generally occurs the evening on the day that you underwent the Ga68 PET/CT. I would recommend taking notes, as there is a lot of information in a short span of time. I would also recommend if family is present, to have them with you. They will likely be hanging out in the hospital quite a while that day and because you haven’t received treatment yet, you can leave the ward and hang out with them. You will generally be scheduled for PRRT the day following your consult with Dr. Baum. Once you receive treatment, you will be stuck in your room for 48-72 hours with the exception of having uptake scans. It’s a German law apparently. You may or may not have other post treatment testing, but after the 48-72 hour period assuming no complications, you will be discharged. The discharge process takes much longer than you would think it would. You will receive travel documents, medical records, and discs of your scans from most likely, Dr. Kulikarni. He is an awesome doctor that you will deal with frequently on the ward and he speaks fluent English. You will then make your way back down to the registration area and check out / reconcile your bill and off you go.
The trip back to the US is straightforward until you go through customs and set off their nuclear material scanners. You will need to make sure you have the travel documents provided by the hospital and be prepared to be held for generally up to an hour. If you have a connecting flight, I would recommend scheduling it at least three hours after your arrival. Depending on customs and their familiarity with things, the process can take quite a while. Once through customs though, you’re home free. Your follow up trips to Bad Berka become unquestionably easier each time.

A summary of things I’ve learned

1. The drive from Frankfurt to Weimar/Bad Berka is the exact same length of time as the drive from Berlin to Weimar/Bad Berka. I don’t know about the train service though and Frankfurt may be easier if you plan on taking a train. Berlin is a much saner airport than Frankfurt and getting a rental car was easier there. The cost of airfare was no different and each time I connected in Amsterdam to Berlin. The Amsterdam airport is equally as large as Frankfurt, but seemed easier to navigate. You also go through passport check/customs in Amsterdam both coming and going and don’t have to do that in Berlin. This seemed easier than Frankfurt.
2. If choosing to rent a car, I have found that europcar.com offers the best rates with minimal hassle as compared to going through any of the individual car rental places. You book your car and your reservation will tell you which agency to check in with. Also should you get a ticket in Germany, europcar.com does not charge you for providing that information to local law enforcement, whereas the car companies themselves do to the tune of $25.00 US.
3. If renting a car, check with your credit card company about whether they provide rental car insurance. I know that American Express does. Also check with your own insurance company on this. If you have to pay for rental vehicle insurance through your credit card because they don’t cover it, trust me that I think it would be cheaper than what they will gouge you for at the rental car company. Again, the rental car experience in Berlin was much more pleasant than Frankfurt.
4. More rental car stuff… Make sure you go over your car with a fine tooth comb for damage, document the damage by taking pictures with your cell phone and don’t be lazy about finding a rental car company employee to document the damage. In Frankfurt in particular, the guys who check in your car get bonuses for finding damage and they do a very thorough job of looking for it and comparing it to what’s been documented. Again, Berlin isn’t that bad.
5. Driving in Germany… The autobahn is pretty intuitive and I found it an awesome experience and a model I wish the US would follow. Don’t hang out in the left lane, think ahead and follow suit from the other drivers. It helps to browse Germany road signs, parking signs and the like before going over. Parking and no parking zones on streets seem to be the most confusing, but honestly, it isn’t as big a deal as you would imagine. I would also make sure that you get navigation in your car and have the rental car company set it to English. It makes it ridiculously easy and remembering to when we navigated with paper maps, I’m surprised I could ever find anything 15 years ago.
6. Cell phones – with today’s cell phones, it was cheaper for me to call Verizon and add on international pass to my phone. It’s a daily charge of $10.00 US. Yes, you can get a prepaid phone once in Germany and just use that, but there’s the obvious inconvenience of not having your contacts programmed into it. I haven’t checked into getting a European pre-paid phone prior to leaving, but seems like a good option.
7. AirBnb – You can find several very high quality apartments ranging from $40 - $80 per night. I provided Gary with contact info on a reputable person. Just make sure that you look at the apartment beforehand because if stairs are an issue for you, most places have stairs. Parking is also pretty tough in Weimar and depending on the AirBnb, there may be some walking involved between where you can park and the apartment.
8. Finances – I chose to open a bank account with Deutschebank at the Weimar branch. It took a bit with a minor language barrier, but I was able to do it using my US address. I chose to do this so that I would have a local Maestro (debit) card and a place to deposit money when the Euro is down. It makes paying for treatment, as well as getting food and gas much easier. Having an account with Deutschebank also made it easy to pay traffic tickets, LOL, which when compared to the US, are ridiculously cheap. I got a parking ticket and two speeding tickets due to traffic cameras. Most citations are from traffic cameras and get mailed to you. If you see a big flash when you’re driving through a town, expect a ticket in the mail with a nice picture of you behind the wheel. The ticket will show up in your mail about 10 days after you get home. The cost of both speeding tickets was $15.00 US. I simply wasn’t paying attention and not intentionally speeding. The parking ticket was ironically cheaper than paying for overnight parking somewhere, so win-win. Paying the ticket through a German bank account is a simple bank transfer. If you are going through your US bank, it’s going to be much more expensive because of the wire transfer fee and exchange rate that your bank charges, but it’s doable.
9. Finances Continued – there is an online service called transferwise.com that allows you to transfer your money from your US bank to a German bank account if you have/get one. You could also likely use this to transfer funds to the hospital. It is automatically converted into Euro and they do not charge exorbitant rates. It’s a flat rate that is less than the cost of doing a traditional wire transfer with exchange rates in addition, transferwise.com gives you up to the minute exchange rates. For example if the US $ to Euro is 1.04, that’s your rate! You pay a flat rate of $25.00. This is cheaper than even using a debit card at an ATM and paying your banks conversion rate.
10. Arrive two days early for your first trip to get a lay of the land.
11. Go to the grocery store or convenience store and get some food that you like. Yes, German grocery stores are a bit daunting again due to the language barrier only. Otherwise, they are great with everything you could ask for and more. Take food and drinks to the hospital because the food at the hospital is generally pretty bad. Get ready to eat food because there really isn’t a way once on the ward to prepare food.
12. Food at the hospital is not a typical US meal for any meal. Breakfast consists of bread, meat, cheese, fruit, and cereal if you order it. The first few days that you are in the hospital, you get a standard meal tray. After that, you actually get to pick and choose a few things. Lunch is the only hot meal for the day and on each trip at least once I was served herring in a cream sauce that both smells and tastes like cat food. The evening meal is more bread, mystery meat and cheese.
13. If you have family staying in the area, they can bring you meals to the ward, which isn’t a bad option. They can do this even when you are confined to your room due to having received PRRT. Also if you are alone, the nursing staff will order pizza for you if you have the cash to pay for it. I think you can also order beers, which is in stark contrast to the US hospitals.
14. More on food… Weimar has many very good restaurants. There is no shortage of Italian restaurants and spaghetti in German is spaghetti in English. You will know the menu without trouble. If you don’t like Italian, there are other options to include a Texas Steakhouse.
15.  Checking yourself off of the ward. On your first day after you get registered, find the ward, get your room, and get labs drawn, you can check yourself off of the ward for the night. Based on your schedule of testing the following day, the nursing staff will tell you when to be back on the ward. It was generally speaking around 0800. Once the testing is completed that day, you can check yourself off of the ward again, so you can stay with your family for that night and eat decent food. As an example, on my last trip (November 2016), I registered, got to the floor, dealt with the preliminary stuff and checked out. The following day, I checked back onto the ward at 0800, underwent testing until 1:30PM and checked off of the ward for the night. The second day full day I checked in at 0800, underwent testing until about 2:00PM, met with Dr. Baum around 6:00PM and checked off of the ward for the night. The third day was PRRT day and was confined to the ward until discharge.

That’s about it… I hope this helps others out. My wife is going to be providing an account of her experience as a family member to provide perspective. Find it below this!

J. Reynolds

My perspective as the wife/fellow traveler: As Jay said above, we rented an Airbnb for our trips to Weimar. I preferred this as I was alone much of the time. Weimar is extremely safe and though it can be intimidating with the language barrier, I learned so much about myself and the German people during our time spent there. I ate at Italian restaurants much of the time because their menus were so easy to understand. There is even a “Weimar Texas Steakhouse” that had pretty decent American style meals and good ol’ American burgers. There are sausage carts in the town center if you are in the mood for a German bratwurst and they are amazing. Also, the German restaurants are excellent if you want to try local fare. If I needed help with translation, I used a photo translation application on my smart phone and google translate will do this on the fly by using your camera on the phone. With the app, you just take a picture and it will translate what it sees into English. A godsend of an application. There is SO much to see in the area and I made the most of my time while Jay was in lockdown. Weimar is on the UNESCO heritage site list. The museums, palaces, libraries, and history you can uncover there is absolutely amazing. I also ventured out to explore surrounding towns (though Weimar itself has so much to see, it can be overwhelming). The German people may not be quite as friendly and outgoing as their American counterparts, but they are NOT unfriendly. Many do not make eye contact and it can feel as though you are an outcast or are being ignored, but that is just their social makeup and it cannot be taken personally. Our first trip was downright intimidating. After the second, third and fourth, it was a breeze and I couldn’t wait to get back there. I have fallen in love with the country and the people. Eating alone, exploring alone and driving on the autobahn alone gave me a new sense of strength. If you are there with a loved one who is receiving treatment, you will be separated from them for several days. Rather than sitting around, worrying and waiting, get out there and explore!

Michelle R