An Honest Discussion on the Logistics of Getting Into a Trial
Clinical trials are not as straight forward as people think. I currently don’t qualify for two reasons.
My sneaky myeloma
First, my myeloma has become sneaky (oligo secretory) and hardly shows up in my blood, even as my last CT scan shows it is eating away at my bones. Trials generally aren’t very favorable towards people like me because it is hard to measure a disease response.
I now require serial bone marrow biopsies and PET scans to see if the disease is responding to treatment since it is hard to rely on blood and urine tests. I need a certain number of kappa light chains in order to qualify, and I don’t have that.
Blood counts don't qualify
Secondly, my CBC’s currently exclude me from entering a trial. In order to qualify, they require my platelets to be more than 50, some even require 100, something I have not been since my second stem cell transplant. So, sadly I don’t qualify there either. Then there is the fact that kidney and liver function, heart and lung function often exclude a patient from a trial. Fortunately, that is not the case with me.
The nightmare of trial travel logistics
Next is the challenge of travel. There are a couple of trials that look promising if my numbers cooperate and I qualify. Unfortunately, they are all either a day’s drive, or a plane ride away. This would be okay if it was a one-time deal as was the case with my CAR T-cell in 2018, but these treatments are every week. We can’t afford to live there; hotels are outrageously expensive. Airports and airplanes are not the safest place for me to be with my compromised immune system, and driving 14 hours one way twice a week is completely unrealistic.
I have a hard time driving just two hours with the way my back is these days. I would need a caregiver to help drive and I may very likely have side effects (possible cytokine release syndrome) that would make the trip very difficult. My husband can’t take me. He can’t get time off work and needs to be there for our daughter. We have no family members outside ourselves, and I simply cannot ask such a sacrifice of any of my friends. I know many are sincere when they say they want to help, but these trials are until disease progression.
There is no easy answer
I want to live, but right now more than ever I need quality time with my family. There is no easy answer here. For those that have thought I may be giving up, this is what a search for a viable clinical trial sometimes looks like. Does that mean I have given up? Absolutely not. This is simply a realistic way of analyzing the current situation, something I have been doing with the help of SparkCures almost daily for the past couple of weeks.
I wrote an article a couple of years ago called To Trial or Not to Trial, That Is the Question. I wanted to understand why only a small percent of adults join trials. I started out thinking that it was because people did not want to, that they were scared of being a guinea pig. After both researching and living it, I have come to understand that it is not so much that the patient doesn’t want to do trials, it is often the logistics and our bodies that make the option of a trial out of the question.
I did not write this article to be a Debbie Downer, but we have to show both sides of the story. In conclusion, I would like to say that I am a firm believer in trials, and willing to be part of them. Trials and the brave patients that join them are the reason most of us are alive today. Let us not forget that.
Editor's Note: We are extremely saddened to say that on October 23, 2019, Cherie Rineker passed away. We are honored that Cherie shared her experiences with our community and beyond. She will be deeply missed.
Did you have to make diet changes after your blood cancer diagnosis?
Join the conversation