• PRRT in Basel – The In’s and Out’s:
    • Date: Basel gives you the date you need to come several weeks ahead. They moved the date for my second treatment to suit me and my family so it seems they are flexible. They give you the second date a couple weeks after the first treatment.
    • Off Sando: You need to be off Sandostatin/Lanreotide for at least six weeks before the treatment. My body tends to “hold onto” the drug, therefore I went off for twelve weeks just to be safe.
    • Wednesday to Saturday: For the first treatment I was told to arrive on Wed between 2 and 3 PM. As you can imagine, the hospital is huge and therefore has several entrances. You enter off Petersgraben street. Once inside, you walk behind the middle atrium looking thing to a long row of red elevators (about six or eight of them). Go to the fourth floor and turn right out of the elevators. Then turn left following the sign to NUK. When you get to a glass door, press the red button closest to the glass door and they will open it for you. Martin, Kerstin or Pierre will welcome you and will show you to your room. They are very friendly, speak perfect English and take pride in taking good care of you. The team is very experienced, capable and professional. The hospital is a nice facility and the food is much better and fresher than anything we get in most US hospitals. This is a photo of a typical game meal (October): Venison, Spaetzli and Brussel Sprouts. They try to pair Americans (and other nationalities) together in the same room which can be fun. They then took bloodwork, went through the menu choices and let me go. They gave me the choice to stay overnight that night in the hospital or spend the night in the hotel. I arrived the next morning, Thursday, at 8 AM, unpacked my stuff and was taken downstairs to pay. Back upstairs they inserted the IV to start the Amino Acids (to protect the kidneys) one hour before the Lu 177 injection. They gave me the anti-nausea pill before the AA started and I had no ill effects whatsoever with the amino acids. I have heard that others have had nausea. I waited the hour and was taken downstairs to the basement where they were waiting for me to administer the Lu 177. They took me into a small room, protected themselves, and brought the radiation into the room in a lead case. The liquid radiation was in a little vial that they injected into the IV, which takes all of 10 seconds. I felt ill for about 30 seconds, visions of vomiting but it cleared up very quickly. The 4th floor nurse came down and escorted me back upstairs, making sure to keep his distance from me because I was “hot”. I felt fine the rest of the day and that’s it – easy peasy. They had given me a steroid at some point, something about tumors swelling or something and therefore they said they would give me a sleeping pill if I had trouble sleeping. The next day I continued to feel fine. I had a scan and Dr. Wild came to see me that early evening to go over the scan and to let me know about my uptake and how well he thinks the treatment will work (he’s very positive about my outcome!). I was released on Saturday morning before 9:30. We traveled for another three weeks all over Europe and I only started feeling the fatigue hit on the last week.
    • Symptoms after PRRT: Dr. Wild told me I would become anemic around week four because the radiation kills the red blood cells. Pretty much at week four I started to feel the fatigue starting. It was extreme and debilitating for about a week and a half but after that I was able to exercise daily (gardening, riding my bike, walking) but I still had to take short naps every other day. I asked about taking iron and he said it wouldn’t help. By week six my diarrhea was completely gone and most of my sudden blood sugar drops. I had soooo much energy. It was crazy. I had completely forgotten what “normal” was like. I remember being super excited that I was able to actually clean my house from top to bottom in one go! For those friends who only knew sick Polly it was a real surprise. A NET friend told me she had the best three years in a very long time after her first rounds of PRRT. I walked a lot during our three weeks of travel and rode my bike and gardened when I got back home and I feel the exercise helped me recover faster but I have no idea if that’s true. I started losing my hair at week four and it hasn’t stopped yet (week 12). I have a tendency to lose my hair when I become anemic so I assume it’s from that but Dr. Wild didn’t think it was from that so maybe it’s just the radiation itself.
      • Update 10 weeks after second treatment: I’m suffering from major fatigue even though my bloodwork numbers are almost back to normal. My oncologist said there is nothing you can do about it and it could go on for many more months. My hair is still falling out.
  • Monday to Wednesday: The second time, ten weeks later, I arrived on Monday at 9:30 AM, had the PRRT that same day and was released on Wednesday morning at 9:30 AM. Again I felt perfectly fine. Immediately following the injection I was nauseated for about two minutes. That’s it. I spent Wednesday walking all over Basel with a friend, spent the night in a hotel and flew home Thursday. I’m sitting on the plane now surrounded by men and older folk so all is good (need to avoid children and pregnant ladies).
  • Sandostatin/Lanreotide After PRRT: Basel wants you to go back on Sando/Lanreotide at week 10 after your last treatment. Dr. O’Dorisio wants you to get back on it immediately after your last treatment. He said in his trial of Y-90 PRRT patients, those who immediately start Sando/Lanreoptide after PRRT have a TTP of 5 years (avg) versus those who don't (3 years avg). I will have my shot very soon. I’m going to start with 60 mg. Lanreotide because the stuff makes me so sick. Sando makes me just as sick. The only reason I choose lanreotide is because the needle is much less painful for me.
  • Scan after PRRT: Basel wants you to have a scan (MRI (best for liver mets), CT, PET, whatever works for you) at week 10, I think, after the last treatment but don’t quote me on that. I didn’t register it because, since I can’t get good MRI’s in Austin, I will have to wait until April when I go to the NIH for my twice yearly scans. The NIH has excellent scans.
  • Housekeeping and radiation:
    • I had brought my own clothes as I knew I would be up moving around so it was much more comfortable to have my own comfy clothes. The woman I shared the room with the first time was mostly bed ridden and she asked to use their gowns, which they supplied.
    • They do not want patients to leave clothes behind, especially if they are radiated because they would have to store them in their radiation area until they were no longer contaminated. Clothes get radiation contamination when bodily fluids touch them.
    • The nursing staff and doctors stand behind a lead wall to speak to you or to give you your meals.
    • Bring a couple plastic bags to put your contaminated clothes in inside your suitcase. I’m not sure how this keeps the radiation off the other non-radiated clothes but that’s what they told me to do.
    • Wash the radiated clothes separately when you get home. If you are traveling afterward you can wash them in the sink at your next stop and then wash them in the machine when you get home. Or find a laundromat on your travels so you can wear the clothes before you get home.
    • There is a cafeteria on the 2nd floor with good cappuccino and latte. There is also a small kiosk next to the cafeteria which sells English newspapers and toiletries.
    • They want you to drink at least a couple liters of water the day you have PRRT to flush the kidneys.
    • All bodily fluids are contaminated so you must only use the toilet on the fourth floor radiation section. I walked outside through the park that is located in the middle of all the hospital buildings to the pediatric ward to drop off some English speaking children’s books I didn’t want to bring home with me (I had traveled with my grandson before Basel) but I couldn’t dawdle and enjoy the outdoors in case I had to use the loo.
    • Companions must keep at least five feet away and not spend more than a half hour a day with you while you are in the hospital. They told me my friend would be getting the equivalent of an x-ray a day for a few days once we left the hospital.
    • You have to stay away from children 13 years and younger as well as pregnant women for ten days after treatment. I made it a point to avoid all young women because who’s to say if they are pregnant or not.
    • As far as the flight goes and not sitting near children or young women, I was told by several people that it was better to go to your seat, look around and if there was a problem to let the flight attendant know you need to be moved – rather than let anyone know before you board. You don’t have to say radiation but rather that you have had a medical procedure.