Third Time... Not the Charm (Nothing Charming About It, In Fact)

[This chapter is dedicated to Sophia Kappen, the daughter of one of my dear friends who lost her battle  with leukemia at the tender age of six years old. Sophia had an initial very encouraging response to  chimeric antigen receptor T-cell therapy (“CAR-T”) before her immune system went into seek-and-destroy  mode. She was a victim of “cytokine release syndrome,” and her loss was a stunning turn of events that is  still felt deeply and will always be felt deeply by her many friends and family. Despite this tragic outcome,  a new bereavement charity called the “Best Day Ever Foundation” was founded by her mother and my  dear friend, Amy Kappen. Please consider supporting bereaved families at  

https://www.bestdayeverfoundation.us/] 

So, this now brings us to trial drug injection #3… the first injection at the “target” dose level and in this  case, the highest dose of this drug that has been given to any person to date. Although the most serious  effect of injection #2 appeared to be some wonky blood results with my kidneys and liver, the only real  practical effect (other than the previously mentioned disappointment of not being able to get home for the  weekend) was an unexpected trip to the Ambulatory Treatment Center for a “bolus” of IV fluids to help  offset some dehydration that had crept in.  

At the same time as I was given the fluids, I also received my (now overdue) Lupron injection. Lupron is a  first line hormone therapy treatment against prostate cancer that almost all guys with prostate cancer are  on for the rest of their lives, even after they become what is referred to as “castrate-resistant” or  “hormone insensitive.” This is because it is the best way to totally shut down the production of  testosterone in the male body (mine is now regularly less than 3 nanograms per deciliter versus a  “normal” of 300-1,000 nanograms per deciliter). And as a bonus, you can get the injection directly into your choice of buttocks. Whoa, good times! 

The good news is that injection #3 was administered pretty much on time – perhaps no more than a one hour delay than the anticipated time of 10:00 a.m. There always seemed to be some internal drama about  when “pharmacy” was going to have the drug done and delivered, but todays was a minor delay at best.  Since the first two injections were delivered to the stomach and injection site irritation remained, the  decision was made to deliver the now two-syringe payload into my left quadricep. There was much  curiosity from the nursing staff as many of them had just been selected to join the clinical trial team. 

Other than just being stuck with a needle, which is as familiar to me now as getting up in the morning, it  was pretty much a nonevent. So much so that by 7:00 p.m., I told my bonus nurse (my wife Diana, who  many don’t know once intended to be a nurse) that she could head on out from the hospital, get something  to eat, and a good night’s rest. Although I was not cavalier about things and knew that the night was still  young, I was able to answer the constant flow of “how are you feeling?” questions from the nursing staff  and friends and family with a truthful “really good – thanks for asking.”) 

Everything changed starting a little after 10:00 p.m. Diana was back at the hotel and other than someone  coming around to collect blood from me and do “vitals” every few hours, I was alone for the evening. I put  a news program on the TV (I am an avowed news junkie) and tried to go off to sleep. Within an hour, I  began experiencing the effects of what is known as “cytokine release syndrome.” What began as bone  chilling cold was, ironically, the result of a 103-degree-and-rising temperature. 

My teeth were chattering and there was nothing I could do to stop it. There were no number of warm  blankets that I could pile on to try to get warm. My nurse was notably concerned, alerting my doctor and  representative of the trial drug sponsor. I try to not ever be overly dramatic with these things, but there  were several hours where I honestly thought I was dying and about two of those hours when I almost  wished that I did.  

It was an unbelievably long night. I remember seeing a fuzzy image of the TV screen at about 4:00 a.m. but  that is about all that I remember, other than just wanting it to be over. Thankfully, they were able to break  the worst of my fever before dawn and Diana did not have to witness what I went through during that  evening. All of that said, it is not lost on me that it could have been worse, and that lives have been lost  along the way to CRS, all to move cancer research forward.  

Until next time,  

Steve