Part One: Getting to Basel | PRRT & Me

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As a NET Cancer patient for almost nine years, my decision to go to Basel was not a light decision. Cost was really the biggest barrier for me. But, the stark realization that I didn’t really need a 401k if I were dead became very real. I waited almost two years to get into the Y-90 trial at the University of Iowa, where I have been seen as a patient for seven years. I was told by the research administrator that “I wasn’t high priority enough” to get into the trial, despite having had three major surgeries, a failed round of Afinitor (a chemo for my type of cancer), and alarming progression in my disease in the last six months. My surgeon in Iowa was very direct with me and said, “Yeah, I don’t know how quickly they are getting people through the trial. If you can afford to make the trip, do not wait.” Time to get serious about this. No one was was going to take care of this for me unless I did.

Since I had been working with the University of Iowa for years, along with my local oncologist in Minneapolis, they had the majority of my records. I contacted the team at Basel directly to find out exactly what they would need. This was the list they sent me:

  • patient’s medical history including histological findings
  • current blood values: full blood count and creatinine
  • current Octreoscan on a CD

The only thing I didn’t have was a current octreoscan, so I asked my local oncologist to order, which he did. I just happened to be at the end of my last four weeks of my Sandostatin LAR shot, so, I withheld getting the shot for a few days and used sub-q as needed to get my scan done quickly instead of waiting another four weeks. After my scan was completed and the reports finished, I asked my local team to send the records to the University of Iowa. From the time that the University of Iowa received my request to send my information to Switzerland and receiving my octreoscan to getting a formal invitation from the University of Basel was exactly four weeks. This may take less or more time depending on their patient load.

The Univerity of Basel assessed my information and decided that I would be best treated with one round of the radioisotope Y-90 and two rounds of Lu-177. When the University of Basel sent my invitation via email, they set a date for the first treatment, and two provisional dates that they project for me. You must agree that you would be able to meet those dates before they confirm.

Upon my confirmation they sent me a packet of information including; patient intake form, a list of hotels in Basel and a separate list of hotels that have special rates, an information file on Y-90 and Lu-177 and the actual formal invitation letter with the date of treatment, where I need to report and the amount I would need to deposit upon entry to the hospital.

change aheadI was on my way!

P.S. Here are the documents they sent me in their acceptance confirmation email.

Read more about my disease history here.

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Dawn Marie
Dawn Marie
Patient and advocate for better diagnosis, treatment and quality of life for people living with neuroendocrine cancers.