Road to Basel, A New Experience for me
By Terry Y. Updated January 2013
Attention: I have been advised of changes in the University Hospital Basel Nuclear Medicine staff, new treatment charges effective in 2013, and a few other important items to be aware of in planning for PRRT in Basel, Switzerland. Please note these changes as they have been updated since my visits and this story were written in 2009. These changes are summarized here and reflected in the document below.
1. The University Hostel will be closing December 31, 2012. The hospital has no other accommodations for patients or family members. (Nearby hotels are plentiful.)
2. Effective January 1, 2013 the costs of treatment will be increasing.
a. For Y90 PRRT the charge will be 9,800 Swiss Francs.
b. For Lu177 PRRT the charge will be 8,200 Swiss Francs.
c. Effective February 1, 2012 Professor Dr. Dr. Damien Wild was elected as the new Head of the Nuclear Medicine Department.
d. Three administrative staff members will be taking care of patient requests, Christine Evard, Anya Guggiana, and Brigit Avis who is Prof. Dr. Dr. Wild's assistant. The combined email contact address is now This email address is being protected from spambots. You need JavaScript enabled to view it.
e. The three nurses that will be involved in PRRT patient care are Martin, Pierre and Kerstin.
f. The hospital's Wi-Fi network is fully operational for the use by PRRT patients.
Michael Neal and his wife Sherrie have written an excellent record of their experiences during PRRT in Basel. Please go to www.roadtobasel.com and read Michael's latest description first. What I have done here is to just add another perspective as I prepared for and conducted the trip myself as a patient in May and July, 2009.
Baseline Requirements
My Diagnosis: Since each person displays their neuroendocrine cancer in various ways, here was my condition at the time just before PRRT treatment:
• 5.3x5x8 cm islet cell tumor on the pancreas head, mostly non-productive, displays some characteristics of a glucagonoma.
• Liver mets estimated to be causing a 10-15% liver tumor burden.
• No octreoscan detectable mets elsewhere.
• My most prominent symptoms were diarrhea and hyperglycemia.
• I was not taking Sandostatin before the treatment, which would complicate the PRRT preparation process a little bit more.
I exhibit high affinity somatostatin receptors (SSRT2) on the neuroendocrine cancer cells, as shown by the octreoscan. This feature and a relatively low liver tumor load are important factors and good predictors of the potential benefit of the PRRT.
As an aside, I was taking oral meds for high blood pressure, high cholesterol, and hyperglycemia years before even being diagnosed in February, 2006.
Since I had been in a RAD001 trial with Dr. Thomas O'Dorisio at the University of Iowa, I was fortunate to continue as his PNET patient for regular treatment after the trial ended. Dr. O'Dorisio has had a long term relationship with the European nuclear medical physicians, especially the University of Basel (over 300 patients referred for PRRT in total), he was well acquainted with the qualifying criteria for PRRT. He required these preparatory exams and qualifiers.
Submitting the test results for qualification to Basel included:
• current CT scan (within the past 60 days)
• current octreoscan
• liver ultrasound
• bone marrow biopsy (see note)
• blood work, (CBC, CMP, tumor marker results, etc.)
• patient history
• letter from referring physician (if applicable, or you are not self-nominating)
Note: Since I had had four rounds of standard chemo previously, there was some possibility that one of the drugs, the Streptozocin, could have caused permanent damage to the bone marrow. Luckily, I had none going into the PRRT. Additionally, the biopsy also checked to make sure I had no cancer cells in the marrow.
It took from December 17, 2008 until January 22, 2009 to complete the tests. On January 30 the packaged results had been assembled and sent via FedEx to Basel.
It is interesting how the process of going to a European country works. You petition for acceptance, and the treatment facility then invites you to attend, all very proper.
Receiving the Invitation
The invitation from Basel came via an email on February 25, 2009 from Brigit Avis, Assistant to Professor Dr. Jan Müller at the University of Basel Hospital. Christine, Anya or Brigit (This email address is being protected from spambots. You need JavaScript enabled to view it.) will be the interface between you and Basel. The invitation spelled out the proposed dates, the general schedule of all treatments planned (mine included two Y90 treatments, roughly 10 weeks apart, and possibly one treatment using Lu177), and the costs of each treatment (including alternative forms of payment, i.e. credit card, cheque, cash, wire transfer). It included an attached information sheet on a few close by hotels and the University's hostel. On another attachment is an explanation of the disease and the PRRT treatment procedure. (When you get to Basel, there is a place to sign this information sheet indicating an understanding of what is to be done.) You are required to respond and confirm this invitation indicating your ability to meet the appointed dates and inclusive costs. If you are able to communicate via email, this is a very quick process once it gets moving.
Another .pdf file will then be sent to you asking for personal contact information, local doctors' names, and emergency contact. I printed this form, filled it out, and faxed it back to Brigit.
Treatment Costs
Note: A cost increase is effective January 1, 2013. See the note at the beginning of this article.
At the time of my treatments in May and July of 2009, the Y90 cost was 9,240 CHF. This breaks out to be
Hospitalization + routine scans cost: 1080 CHF for each of three days stay
PRRT injection cost: 6000 CHF (Y90 DOTATOC)
Total: 9240 CHF
(CHF – Canton Helvetica Franc -- is the notation for Swiss currency. Switzerland is not a European Union country. Therefore, they have their own currency. The exchange rate is about 95 U.S. cents to the Swiss Franc (in May of 2011).
Although as it turned out, I didn't get the Lu 177 treatment, it was quoted to me at 5200 CHF for the total cost.
This cost itemization may be helpful for filing insurance claims. There are many if's and buts, but even if your insurance company denies the drug, because they say it is investigational/experimental, they may approve the hospital room and scans for coverage (the non-experimental parts). Medicare will not pay for any treatment/procedure outside the U.S. There is a slightly better chance of coverage if your insurance is self-funded by your employer. Good luck.
Planning the Travel
There are probably as many ways to travel overseas as there are modes of transport. My wife and I live near Kansas City. Here is what I recommend and/or did:
1. Get your passport(s) if you haven't done this already. Having this time consuming task done well ahead is one thing out of the way that may otherwise influence your ability to accept the dates of the invitation.
2. For the first treatment, we elected to arrive in Basel on Saturday, get settled, adjust the body clock, and tour locally a bit on Sunday before reporting for treatment on Monday morning. If the schedule works out as planned, I will be released about 11:00AM on Wednesday. The invitation suggests staying a few days more for rest before heading home. So, our plan was to leave Basel on following Saturday morning.
3. Using Expedia.com, I compared the cost of connections offered by several airlines. For us, we had to connect through Chicago, or Atlanta, or Dallas, or Detroit, depending on the airline. On the European side of the Atlantic, other stopovers would be London Heathrow, Paris, Frankfurt, Zurich, or Amsterdam on the way to Basel. (The regional airport for Basel – designator is BSL --- also serves Mulhouse, France, and Freiburg, Germany. The airport is actually in Mulhouse.)
I considered flying only to Frankfurt and taking the train from there to Basel. A one-way 2nd class train ticket costs about $97.00. The added cost of flying all the way to Basel was nearly that same amount. So, we elected to fly all the way to Basel, which may have changed the European connecting airport for scheduling. Our routing was Kansas City-Chicago-London-Basel. It's a short taxi ride from BSL airport to Basel (approx. 35.50 CHF). Train and bus connections to Basel also abound. If you want to Google the Basel Europort and/or London Heathrow, you can find the airport layout for familiarization and match the layout with your airline arrival and departure terminals and gates. Probably the same research idea can be applied to other international airports.
4. The hotel selections in the Basel area can easily be checked just by Googling "Hotel Rochat". You will find references to all kinds of other hotels in the immediate area. We chose the Hotel Rochat (the locals said to pronounce it Roe-sha, long "o" and short "a")) since it was closest to the hospital (about 200 paces) and available. I made the reservation on-line www.hotelrochat.com . The hotel promptly replied, and that was an easy task to accomplish. I know that if the treatment dates had been sooner or during a Swiss holiday, it may have been more difficult to reserve the Hotel Rochat room. The University hostel is the other closest place to stay and less costly than the Rochat. The hostel is a ten-minute walk to the hospital entrance. Take your own supply of Kleenex tissues. Your cell phone, computer, and camera battery chargers will probably work in Basel if you have a plug configuration converter. Read the qualifiers on the chargers. They should say 110-240 v, 50-60 Hz. Check to see if your cell phone will work in Europe. They use GSM at different frequencies than in the U.S., but not CDMA at all.
Parking space at the Hotel Rochat is limited to four cars in a very tight area. I overheard it costs 25 CHF/day for this service. Street parking is nearly impossible. Public pay parking is available for the hospital and near to Marketplatz. Since the public transportation is so good and extensive, I'd recommend no rental cars. If you insist, it will be a hassle.
5. If you need to take a supply of special liquid drugs and accompanying paraphernalia, you must have a letter from your doctor in order to get all this stuff through airport security if they question you. No one ask to see my letter. After going through airport security without any cooling for your drugs, get some ice for the container. The airline people are used to being asked for ice to keep medications cool.
6. Take some Swiss Francs with you, at least a few hundred. Your local bank can probably make this currency exchange for you with a few days notice. Your credit card can also be used at the airport to get local money at an ATM, but it's probably cheaper to have this done before you leave home. Getting some native coin of the realm is a big help to avoid at least the initial problems of paying for a taxi and buying food and forgotten toiletries soon after you arrive. Make sure you know your credit card PIN before you find out you need to use it to obtain cash in a foreign country. You might also consider having a few Euros in your pocket for miscellaneous purchases at the stopover airports. I suggest that you call the credit card company ahead of travel, and have them note the expected card usage in cities where you will be traveling. If you select to pay the hospital using a credit card, this advanced notice will preclude any probable denial by the card company.
As indicated above, treatment payment can be accomplished in many ways. I chose to wire transfer the money. That way I could monitor the daily currency exchange rate fluctuations and time the payment for my advantage. A one percent advantage saves 70-80 dollars per thousand. http://moneycentral.msn.com/detail/stock_quote?Symbol=%2fUSDCHF&FormatAs=Index If you use wire transfer, your local bank will have a charge for the service. Also, on the receiving bank end in Switzerland, there will be a 7 CHF incoming charge. The hospital writes this 7 CHF off as I understand it, but it would be nice to take this into account by adding the 7 CHF to the amount being sent.
Food
1. Restaurants are everywhere. Find the Marketplatz and work your way out from there. The market is open every day except Sunday. Only once did we eat at a place where the waitress didn't speak English. She quickly brought over another person and there was no issue at all. Most people speak at least four languages. English is almost universal, as is French, German, and Swiss. Then sometimes you can add Spanish and Italian to their capabilities. How do they do it?
2. From the Hotel Rochat, you are very close to the Marketplatz. Step outside the hotel, make a left, after 30 paces turn left again at the corner of the hotel. That is the Peterskirkeplatz. After 50 yards, or so, there are 80 steps leading down to the market area. The hotel will provide a tram rail/bus map and a free visitor pass if you want to ride either conveyance. We did, all over the place. My wife preferred the steps on the right (south) side of Peters Kirke.
3. Food is more expensive than here in Kansas City, a little over twice the price. Unless you buy a sandwich at a vendor stand for 6-10 CHF, expect to pay 15-20 CHF per entré for lunch and 17-30 CHF for a dinner entré. A half-liter of water costs 4-6 CHF. All that adds up. The Hotel Rochat had a free breakfast (I understand the hotel has recently begun charging for some of the breakfast items since I was there.) and a great lunch for as low as 14 CHF and free water. Hotel Rochat doesn't serve dinner.
4. Tipping. The Swiss love Americans because we tip too much. A friend in Zurich says a typical tip that rounds up the bill to the next whole franc, or if it's a big bill over 60-70 CHF, add 2-3 percent as the tip. Boy, we made a waiter really happy before we learned this.
Clothing
While in the hospital, I wore gym shorts and a tee shirt for sleeping. Otherwise, street clothes are the norm. The room is not air-conditioned, but there is a vent for air ventilation. It was comfortable in May and July. Short-sleeved shirts are appropriate to allow access to your arms for blood testing. I have a chemo port in my right chest from treatments a few years ago, but it was not used in Basel. The nurses recommended I keep the hospital clothing separate from other clothing and wash them by themselves for one time. I used a plastic shopping bag to keep this clothing separate in my luggage.
Communications
Don't forget to take a list of email addresses and telephone numbers. (The Hotel Rochat has an internet computer for guest usage.) You may have an English speaking room mate, mine was Swiss, and we couldn't talk much!
The hospital plans to have Wi-Fi access, but as of July, 2009 it was not working yet. By now (May 2011) it should be.
Hospital Stay Schedule
1. Check in was 10:00 AM on Monday. Orientation, do's and don'ts, menu selection for the entire stay.
2. IV installed by doctor. Amino acids IV drip started at about 11:00AM at 200 ml/hr. Zofran tablet placed under the tongue for possible nausea control.
3. After one hour, went to floor 01 (basement) and received the isotope injection by the doctor. (My wife sat about 3 meters away from me.) No nausea, or vomiting. Didn't really feel anything. The injection is only a few cc's and happens quickly. (Blood counts won't drop for a week or more, and then will require about 6 more weeks to recover.)
4. By 12:30PM I was back in the shielded room with my roommate and eating lunch. There are six treatment rooms and seven beds allowing for 14 patients/week in this nuclear medicine ward.
5. Lounged around about three more hours until the 1000 ml amino acid bottle was empty. IV then removed.
6. 3:15 PM, kidney baseline scan. Took only 5 minutes. (The injection has a little bit of 111-In to give off gamma rays so they can see where the Y90 isotope went.)
7. Post treatment pancreas swelling is usually not much of an issue. If there is a high liver tumor load, liver swells in its encasement and can possibly/will cause pain from the treatment.
8. My wife was allowed in the hospital room, but she stayed behind the protection wall.
9. Second Day – Tuesday. 8:45AM 360 degree abdomen scan. 10:00AM full length body CT scan (no contrast fluid used) and 2nd kidney scan.
10. Met Dr. Müller (Department Head) and Dr. Flavio Forrer (Attending physician) at 3:45PM. They gave me the first impressions of the treatment.
11. Third Day – Wednesday. Breakfast at 7:30AM. Last kidney scan at 8:45AM (another 5 minute process). Met with Dr. Forrer at 9:45 AM. Discharged at 10:00AM.
Notes:
1. You will be told to stay at least 3 meters from any contact with children under age 12 and pregnant women for a few days after leaving the hospital. (editor note - please check with clinic this is not the case at Bad Berka)
2. They will give you a letter to explain the treatment to airport security. I didn't get caught until Chicago. Then all the pocket-sized detectors on every Customs and Immigration official went off within 15 feet of me. They thought the letter was nice, but they used their own equipment to scan, identify the isotope, type of emission, and grade (medical, commercial, or military). It was very routine with minimal delay. I think they welcome us as a test of their equipment.
3. You may walk around the hospital grounds as long as long as you stay 3 meters away from other people and go back to your room to use the restroom. (They catch and contain everything – even shower and lavatory water -- and hold it in tanks for three months.) (editor note - Please check with the clinic you are at this is clinic by clinic policy)
4. They expect you to keep your room clean, and minimize throw-away stuff. They will clean and decontaminate the room after you leave in preparation for the next patient coming a few hours later.
5. I was told by the University of Iowa nurses to Dr. O'Dorisio to be really well hydrated before the PRRT. Do this to minimize nausea and kidney issues from the amino acids drip and the isotope injection. It worked for me. Do it.
6. Since I take an oral medication for hyperglycemia and my tumor exhibits some characteristics of a glucaganoma, I was told to take insulin and Sandostatin on the trip to control blood glucose levels after treatment. There was some possibility of a "glucagon release" from the PRRT. It didn't happen for me, but you might want to check with your physician.
7. I took all my normal drugs with me from home, plus those extra ones in item #6. I kept on taking them while in the hospital. I also took Imodium and Senekot along just in case the bowels caused some irregularities, as you understand. Nothing out of the ordinary happened.
8. Dr. Forrer requested blood counts and creatinine level every two weeks after I got home, to be faxed to Brigit Avis. No CT scan was needed between the first and second treatment scheduled 9 weeks later. (I have the CBC and metabolic panel done locally in Kansas City.)
My Side Effects from the PRRT
1. No nausea or vomiting or pain (I have a low liver tumor load, 10-15% estimated.). Maybe, just a little bit of light-headedness for 10-15 minutes after the injection.
2. My fatigue was certainly noticeable, but not debilitating. We made short walks from the hotel to the Marketplatz to eat, etc. The tram passes were a big help.
Second Treatment Comments
Since we had done the tourist bit on the first trip, we shortened the stay for this last treatment. We arrived late Sunday night, checked into the hospital on Monday morning, released at 9:00 AM on Wednesday, and headed home on Friday. The process worked as smoothly as the first treatment. The doctor offered an appraisal of the results from the first treatment.
Status Report as of May, 2011
This is just my personal experience. So, your uniqueness will determine how you respond. I thought it might be helpful to let you know how I've been doing since the PRRT.
1. I lived with a lot of dark urine and itching (symptoms of bile duct blockage) from the July, 2009 PRRT until December, 2009. Then I started Sandostatin LAR (40 mg/28d). That took care of the itching, but the darker than normal urine that was also present required a common bile duct stent placement in January, 2010. I have chosen to use plastic stents, replaced about every three months since then.
2. After the last of the two PRRT's, the CT scans were nearly unreadable for about six months because of treatment influenced inflammation. When the pancreas tumor was eventually evaluated, the center exhibited necrosis, but the outer rim was still inflamed and tumor had not displayed much if any shrinkage. Shrinkage is still slow to occur.
3. The pancreas tumor and liver lesions are stable as of January, 2011.
4. Blood counts have been a little below normal since the July, 2009 PRRT. I now understand it can take up to two years for the bone marrow to recover from PRRT. This is just my reaction, and should not be assumed to be your response. I have about 3 months to go before I have to admit to having chronically low blood counts.
5. Creatinine levels have been climbing since May, 2010. I have no explanation for this as yet. The prep fluids for nearly 20 years of colonoscopies (family history of colon cancer). IV contrast fluids for bi-yearly CT scans since diagnosis 5 years ago, 20 years of using thiozide (HCTZ) for blood pressure control, and possibly the PRRT are all influencing factors for the doctors to ponder.
Overall, I would say the PRRT has been a positive experience in the treatment of my disease. It bought time for other treatment methods to become FDA approved and available, and to stay at the dance a little longer.
Note: Dr. Jan Müller has recently retired as the Department of Nuclear Medicine Head. The new Department Head is Flavio Forrer, MD Phd, uber Artz. The University of Basel was founded in 1460 by Pope Pius II for the study of Law, Religion, and Medicine. So, this change is routine and the continuity continues.
Good luck on your trip to Basel. Terry Y.
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