Part Seven: Ten Weeks before Round Two | PRRT & Me

PRRT-&-Me---logo

We stayed in Switzerland for a few days after my first round and that was fine. I didn’t really have any side effects, but, I was tired. The only real thing I noticed is that I was having some acid reflux, which I don’t normally have. Hindsight being 20/20, I would have rather just flew home right away and slept for a few days. It was very nice though, we spent some time each day wandering around art galleries in Basel.

Flying home and going through customs

Flying home was pretty simple. We got a plane from Basel to Amsterdam, Amsterdam to Minneapolis. In Amsterdam we went through the customary baggage questions and got to our gate in just the nick of time. The flight was uneventful. I felt fine, but, tired. I slept a lot and listened to music. We arrived in Minneapolis around 3:00pm and got into line at customs. The first agent we encountered was wearing a badge that started blinking when I stood near him. He immediately asked, “did one of you have a medical treatment?” I told him yes. At first he was a little snotty with me, commenting, “oh, so you have a medical treatment and then go on a European vacation?” I explained to him that I had to go to Europe for a medical treatment that was not available for me to treat my cancer in the U.S. When I said that, I think he felt a little like a jerk (and he should have) and completely changed his tune. He asked me if I knew that they were able to detect radioation and I said, “oh, yes, I know all about you people.” He replied with, “you are reading at a four, so you are really hot.” “Hotter than usual?” I asked. We both laughed. It was all good. He had to call over a different agent who brought me to another area after I retrieved my luggage. There were four agents in that area and they were very respectful. One agent had me stand next to a Geiger counter, another agent was asked to look through my luggage (he didn’t seem all that concerned or interested in doing so, in fact, I’m not sure he ever did) and two more reviewed my paperwork that I presented them. The pieces of paperwork that I gave them was the letter that the doctor in Basel gave me talking about the treatment I just had, my receipt from the University of Basel and finally, a document that Basel had sent me initially that explained Y-90 and why it was being used to treat this specific type of cancer. In total, it maybe added an additional twenty minutes to my entire customs experience.

Weeks One through Six

When I got home to the U.S. I had an appointment scheduled to have my Sandostatin shot, so I did that the next morning. I spent a lot of that week sleeping, mostly because I never really feel like I adjusted to the time difference on the way over or the way back. Ten days after my treatment, I went back to work at my regular schedule, which is about 75% time these days. I still felt pretty good. I did a lot of gardening the first two weeks after treatment. Plus, I committed to going to acupuncture twice a week to help with my energy levels.

On week two I went in for labs that Basel requested my doctor to draw. These were all basic chemistries, red and white blood counts, liver and kidney values. Basel requested that these records be sent to them right away, so I sent my nurse an email reminder to send them as soon as possible. She did the next day. Everything was completely normal. No changes for me at all. It also coincided with this test that I received a confirmation for my next round of treatment in July.

Over the course of the next couple of weeks, I noticed my acid reflux was pretty bad and that I was getting increasingly tired. My activities outside of going to work basically dwindled to bare necessities. Did I need to do laundry? Not until I ran out of underwear. Did I need to do dishes? Maybe not until I had used every fork in the silverware drawer. It really became a survival mode tactic. On week four I went in for more labs and mostly everything was normal. The only thing “off” was my platelets and they were still considered normal, even though they were half of what I normally have. Otherwise, everything else stayed consistent. Again, I sent my nurse a reminder that I needed my results sent off and she did so right away.

By week six, even though I was still tired, my acid reflux had resolved and my platelets were completely back to normal. My liver enzymes, which had also become elevated due to disease have dropped to almost half of what they were! Another reminder email to my nurse, who sent off my results to Basel the next day. My energy levels started to come back, which was good, because I was indeed running out of underwear and needed to do laundry! The additional bonus is, my flushing, which had become significant in the last year is almost completely gone.

Now the wait is on. From the time of this writing, I am exactly three weeks out from from my next treatment date.

Attached to this is exactly what I presented to the customs officers. I believe having more documentation made my transition much smoother.

Y-90 Information & Treatment

Deposit for First Treatment

Letter from Basel Doctors

>>> Part Eight

 

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