- Polly Newman - 2015

I’d rather Eat my way through Italy, Pray at an ashram in India and experience the Love of Bali (my favorite place in the world) but alas, at this point in my life, it’s all about flushing, pooping and PRRT. I write this while waiting in Heathrow’s Terminal 5 for my connection back home to Austin after completing my second and final PRRT treatment in Basel, Switzerland. Here’s a rundown of my experiences and thoughts. I am a patient and learned what I mention here by researching NET specialists and their recommendations on options. As you know it seems like every NET specialist has a different opinion on treatment. These are just my opinions based on research I did for myself alone. I am not a doctor. I used bullet points with headings so you can quickly find the specific information you are looking for regarding PRRT in Basel.

  • Medical history:
    • Midgut, liver mets. Diagnosed October 2012 (Ileum blockage). Familial Carcinoid – mother died of it.
    • Debulked: Ileum October 2012; Ileum and Liver July 2013
    • My symptoms are diarrhea, extremely sudden blood sugar drops not related to food, and fatigue.
    • New tumors started appearing in liver Sept 2014; Serotonin levels rising in Jan 2015
    • I needed to do something!
  • Treatment options and how I decided PRRT was right for me: I researched options (conferences, online, visited four specialists). I decided against the liver directed SIR Spheres, which had been recommended to me, because one SIR Sphere treatment has four times the amount of radiation as one Lutetium 177 PRRT treatment. The more radiation a patient has the more likely they will have complications with PRRT. The liver is a pretty tough organ but eventually if you beat it up too much it will give up the ghost. I am very careful with what liver directed therapies (LDT's) I choose to do in order to keep treatment options open for me in the future.I have a friend in the hospital with Leukemia after two SIR Sphere treatments. Surgery was no longer an option because tumors kept appearing. Nanoknife was not an option because there were too many tumors. It was between bland embolization and PRRT. I decided PRRT was my best bet. Studies showed that the European protocol of surgery then PRRT early on was giving patients quality of life as well as saving lives. The treatment stops or slows tumor progression (Time to Progression, TTP) for two to three years on average. But for someone with low disease like me, Basel said they have seen six and seven years TTP! The other thing is that my body is swimming with cancer cells and since this is a systemic treatment that works down to the cellular level, why not get as much of the cancer that I can rather than a LDT.
  • IMPORTANT! Tumors not showing up on scans – No Uptake: I was told I was not eligible for PRRT because my tumors didn’t show up on the Octreoscan or the Gallium 68, and therefore I did not have receptors/uptake. I learned through ACOR (what would we do without ACOR?!) that Dr. O’Dorisio’s team tested tumor tissue for receptors in the lab. So I went to wonderful Dr. O’Dorisio at the University of Iowa Hospital who had my tumors tested in the lab using a tissue block sent to him from the NIH (I’m in the Familial Carcinoid Study). It didn’t matter which tumors they tested – ileum or liver. I made an appointment, first making sure he would have the results for my appt. and flew up there. Dr. O’Do informed me that 98% of my tumor cells had receptors! I nearly hugged him! Phew…what a relief. PRRT was available to me after all. Now I had two positives on my side: relatively low disease and good uptake, which means I may see more TTP years than the average two to three years.
  • SST2a Test for Receptors/Uptake:
    • The receptor test, SST2a Test, Dr. O'Do's team does was developed by a pathologist, J-C Reubi, at the University of Basel. He developed a monoclonal antibody which is highly sensitive and highly predictive expressly for SST2a receptors.
    • Dr. Andrew Vellizi (not sure of correct spelling) at the University of Iowa Hospital is the one who administers the test for Dr. O'Do's patients and he is willing to teach any facility in the US how to do the test. (Seems like a lot cheaper way to find out if one has receptors versus an Oscan or Ga 68 scan! And less radiation!)
    • It doesn't matter which tumors he uses to test for receptors (primary, liver, etc.)
    • Dr. O'Do is happy to accommodate single visits. If you want the test done you will have to have at least one visit with Dr. O'Do (once he has had your tissue tested). You or your doctor can call his nurse to get the checklist of what he needs before you come (he mentioned: tissue block, recent CT scan, history).
    • He said approximately 46% of patients who come to him after having been told they don't have receptors/uptake, show uptake with the SST2a test. That's HUGE!
  • Why Basel? I chose Basel specifically over the other locations because:
    • They have been doing it the longest so are very experienced - (editor's note - Rotterdam was first in 1996 / followed by Basel and Bad Berka in 1997)
    • Dr. O’Do has such a good relationship with Prof. Damian Wild who heads the PRRT there
    • I have heard nothing but great things about the program there
    • I used to live in Switzerland for 20 years so am comfortable with the country, languages and tons of my friends are still there.
    • My daughter lives in Melbourne, Australia where they offer only Y-90, otherwise that would have been my first choice. (editor's note they do only lu-177)
  • What you need to send to Basel:
    • It will be much easier for you to go through your doctor than getting approval on your own but I do know people who have done it.
    • You will need to send your history, a recent scan (in my case it was an MRI because it’s best for showing liver tumors), either an Oscan or Gallium that shows your tumors (proof they have uptake and PRRT will work), failing that, the receptor lab test results. Also blood work to make sure your kidneys and liver are in good condition, as well as your red blood cells because of the anemia. I’m not sure exactly what else Dr. O’Do sent. I am not sure if you have to prove progression. I had obvious progression but I don’t know if that is a prerequisite.
    • Contact Info: Brigit Avis-Furler, Patient Management Nuclear Medicine, Clinic of Radiology & Nuclear Medicine, University of Basel Hospital, Petersgraben 4, 4031 Basel, Switzerland. Phone +41.61.556.53.84; Fax +41.61.265.49.25; email: This email address is being protected from spambots. You need JavaScript enabled to view it.. Brigit is the administrator and can’t answer medical questions but she will forward them to Prof Damian Wild. (In Europe Professor is a higher title than Doctor. He is actually Dr. Dr. Prof Wild.)
  • Accepted for PRRT in Basel: Dr. O’Do got the ball rolling immediately by contacting Prof. Damian Wild at the University of Basel Hospital in Switzerland. He has sent over 400 patients there for PRRT. Prof. Wild requires tumors to show up on either the Oscan or the Gallium but Dr. O’Do sent along the results of the receptor lab test and I was accepted. Because I had relatively little disease I only needed two treatments. This was June 2015 and my first PRRT was scheduled for August 19, 2015.
  • How many treatments: Basel tells you how many treatments you will need. Minimum two for low disease like me and maximum four at 10 weeks apart. Dr. Wild in Basel said one of his patients has had his 12th treatment with no sign of leukemia. Of course, from what I’ve read, everyone has a different life-time limit of the amount of radiation they can have. Try to avoid as many CT and nuclear tests as possible in your life-time so you can save your radiation up for PRRT. My tumors show up really well on MRI’s.
  • Cost:
    • Lu 177 is 10,000 Swiss francs per treatment which was around $10,400 for me with the exchange rate at the time.
    • It is my understanding Y-90 costs 11,500 Swiss francs but don’t quote me on that.
    • They can do one Lu 177 treatment for your small tumors and then do a Y-90 to get the big ones for the second treatment. Pretty cool.
    • Round trip flight per person, say around $1500 each, at least one night hotel before and one to two nights afterward, say $300, then the hotel for your companion while you are in the hospital, say another $300, taxi from Basel airport to hotel is about $50 each way, meals (Switzerland is expensive!) plus the PRRT charge so you’re looking at around $14,500 each time you go with a companion.
    • You can pay using credit card, which I did so I could get the points ;). I’m sure they don’t take US checks.
    • You can take money out of your retirement accounts like 401K and IRA’s without penalty if it’s to pay for medical expenses.
    • I have heard other patients have had success with their medical insurance paying at least a portion. I have an EPO, which doesn’t pay any out of network so my insurance paid zilch.
    • What about CrowdFunding.com or gofundme.com as a way to collect money for the treatment?
    • It may be worth itemizing your taxes the year you do PRRT as you can add all your medical expenses.