Clinical Trials

Oh, those cherished moments of not worrying about what to do next! And then those moments where you have to choose what is next! They both come with a lot of things to unpack. I explore both in this Karalyn Cares, and I'm also going to dive into the very important topic of clinical trials from my experience. I hope this helps someone else considering the option.

There was a window of time when Jimmy was feeling pretty darn great and the kids seemed to be in a good flow. You know how that unicorn of time happens while you are busy in life? It was a nice time. I even had the idea to spend an afternoon out and about!

Jimmy AND KARALYN CELEBRATE HALLOWEEN!

It was a bit of a windy day in the fall. I enjoy the wind. I even like the scary wind that we get here in California. A good Santa Ana wind event can put me in a good mood. I decided to live on the edge and pop over to the next town for a black decaf house blend, because I do not need any extra excitement in my life!

I headed straight into one of those home stores that sell just about everything. Within ten minutes I had slippers, a new doormat and dish towels with chickens on them! Not just any chickens! These were dressed up for Halloween and were carrying bags to collect their tricks or treats! I felt so relaxed, which was unusual for me after Jim's NET cancer diagnosis. Just as I started to feel like a true member of society for the first time in a long while, my cell phone rang. Sometimes, I could swear the tone of the ring was full of extra urgency. I answered the call. It was Jimmy. He said he had a call from his oncologist and that he wanted Jim to come to his office immediately to sign up to be part of a clinical trial...He needed to fill out forms and get the ball rolling as soon as possible. Jimmy was pretty excited and I was standing in the home store holding a coffee mug with a pug dressed up like a pumpkin on it. I had a little theme going. I wanted that mug, but honestly, I was worried about lead content and probably dodged that possible issue as I put it back on the shelf and ditched my cart. I hurried outside into the flurry of wind, where I could talk with Jimmy on the phone and let him explain to me what was going on. What a way to disrupt my perfectly good shopping trip to a store where I really didn’t need anything but the tranquility of mindless shopping for that perfect thing.

He said he was on his way to Cedars-Sinai (a hospital in Los Angeles) to start the process. I was not on board with what felt like too sudden of a rush into something that we knew next to nothing about. So, I hopped in my car and braved the winds that would have been great for a “Wizard of Oz” scene. Both hands and some choice words helped me drive the hour or so to the hospital. I found Jim in a room with a lovely person and a giant stack of papers. I walked in and took all the oxygen out of the room. It became apparent rather quickly that I was not ready for this change in our little stretch of happy easy life.

Everything we were told about the clinical trial was carefully explained in an upbeat manner. The person giving us the lowdown had on a pretty sweater and pearls. This is vivid in my mind because of the Santa Ana winds. I walked into the room literally looking like I flew in on my broom. My hair was windswept and my attitude matched my appearance. On one hand, I wanted Jim to have options. I wanted to know that there was something new that could help him and others. I wanted so badly to share the excitement of their new approval to start this trial. BUT, I did not. I am a question asker extraordinaire! I wanted to know more about it than even they knew yet. This was the beginning phase.

As we all know, I was not living with NET cancer, and Jim had to make decisions about his health and body. He signed the preliminary paperwork and was given appointments for a scan and labs. We were briefed on the risks and what it would mean for his normal monthly injections and scan timetable.

I was worried that Jimmy could be somehow harmed by this trial. I think part of it was that he was doing so well and feeling so good. I felt like we were having such a good flow of life and this felt invasive to our feelings of security. When leaving the hospital, Jimmy’s oncologist came to find us for a talk. As we walked away feeling a little hope of what could be, he walked over to me and literally pulled a leaf out of my hair. Nothing like an awkward moment to lighten the mood!

I learned rather quickly that there are a lot of protocols to protect those participating in trials. I am the first in line to tell you that they are necessary and I am aware without them, there would be so many bigger issues, but I still didn’t feel right about this trial or the timing of it.

Jim was onboard, so I had to do as much research as I could in that short amount of time. Jim did the labs and scans that were required while I fretted about the whole situation. I looked at my young 40-something year old husband and didn’t want him to experience any possible harm for a trial. Of course that is not the basis of trials, but it can be a reality. During the first month or so, something in the criteria changed and Jim was no longer a candidate for the trial. I was relieved but realized Jim saw it differently. He wanted more tools. He wanted more choices than he had at that time. You know what? We were both right. Rushing into something experimental or not trying something that could prolong your life is a crossroad. We learned a lot about clinical trials over time. We learned that so many clinicians, scientists and researchers are passionately working to find solutions for the NET community. We learned that just because something is being offered to you, it doesn’t mean you have to try it. This is a personal decision, and a lot to think about. Sometimes, time is of the essence, and you will discuss it with your family and go for it! I think that your decision is the right decision! We don’t know anyone’s outcome beforehand regardless of the treatment we choose.

I have watched so many treatments come into existence over the course of the last twenty plus years that are amazing for the NET community. Some that Jim took part in. Some that came on too late for him or weren’t right for him. I watch, with a heart full of hope, for everyone living with neuroendocrine cancer that the clinical trials in the works right now will continue to get better and better.

JIMMY IN BASEL, SWITZERLAND TO RECEIVE prrt TREATMENT

I am as grateful for the industry as I am for the medical clinicians. We should all be wearing the same jersey as we are all working to learn the most we can. Jimmy lived a longer life because of PRRT that was then only available in Europe. I see it advancing and reaching across the globe now.

Sometimes, I think about the abandoned cart at TJ Maxx and wonder if someone else nabbed the fall décor I had carefully shopped for. Those chicken dish towels were so fun! I also imagine that next time I went shopping, I may have found something better! Just like we did with other trials. Please look back at last month’s newsletter for more about clinical trials and talk to your care team.

As we approach that time of year where the wind will be picking up here in California, I hope that you find days to do what makes you happy and enjoy some pumpkin spice treats heading our way soon.