Yesterday was infusion day and the start of my third cycle of MDX-1106 in Boston. The kids are off from school this week so we took them with us and they spent the day skating and playing in the city while I spent my day at Beth Israel for a battery of tests and treatment.
At the start of each cycle Medarex requires trial rats to undergo a CT scan, an EKG, more blood work, urinalysis, and physical exam. I got to the hospital nice and early and spent the first few hours undergoing all the necessary tests. I met with Dr. Cho and team at 1pm and he told me that based on his eyes only (ie, an unofficial read), my CT scan showed more shrinking and stability in the tumors in my lungs. Some have gotten smaller, some stayed the same. Of course I was upset because I had set the bar so high for myself that I wanted them totally gone. He reminded me that my immune system had been suppressed because of the steroids I have been on and that despite that, my body still responded to the treatment. He insisted this was a good scan. The radiologists have not given their official report yet so we are still waiting to hear the final word on actual numbers and size of reduction.
I then walked over to the adjoining building for my infusion of MDX-1106. I saw my regular nurses, we exchanged pleasantries and started the IV. Within 20 minutes or so I started getting very itchy on my scalp and my neck. My skin felt hot to the touch. I couldn’t scratch myself hard enough for any relief. Then I started getting really hot on my face, my throat, my back. I got out of bed and walked to the bathroom in my room and poked my head in to look at my face in the mirror. Well, what a shock; I was red, swollen, and full of hives. I looked like a creature from a horror film.
I paged the nurse and she came in immediately and said “Whoah. OK let’s get this under control.” She left to get help and then my torso started to break out in hives as well. I got lightheaded and dizzy and could feel the reaction to the MDX move throughout my body. The nurses came in and stopped the infusion and gave me a large dose of Benadryl and Pepcid (yes, Pepcid is an antihistamine). I remember asking them if I was going to be OK, but the words didn’t come out right. Talking became very labor intensive, so I just shut my mouth and watched them work on me. One of them asked me to stick out my tongue, which I did, and she told me it was swollen. It is such a strange feeling to have my tongue swollen so much that I could not really talk. As I sat there quietly they told me that some patients have such bad tongue swelling that it blocks their throat and prevents them from breathing. Nice. I didn’t have any trouble breathing and they assured me that was a good sign. My blood pressure had spiked to 175/111 and my head felt like it would pop.
Then the Bendaryl kicked in. I could feel the swelling in my skin go down and the pressure in my head started to disappear very quickly. They had paged Dr. Cho during this mess and he came running in to check me out. He said that sometimes the body will have an allergic reaction to new drugs right away or it may take weeks. In my case, I proved to be in the latter category by reacting badly to MDX-1106 months after my first infusion. He said that when I come back in two weeks for another infusion they would premedicate me with Benadryl and Pepcid before the infusion. He also said that if I had another reaction with the premedication that I was done with MDX-1106 for good. Their worry is that my next reaction, if there is one, could be far more severe, with my throat closing and trouble breathing.
In any case, the nurses said that lots of patients get premedicated before infusions and they do just fine. I have the distinct honor of being the first MDX patient who had an allergic reaction to the drug. I am optimistic that it will all be fine next time when I go in.
Another thing Cho said while he was in my room was that he had seen the radiology prelim report on my CT scan and he said that all tumors had been reduced in size. All this despite the steroids and a suppressed immune system. So as he said, the drug is working so well for me that they want to do whatever they can to keep me in the trial. Right now I am pulling for Benadryl to keep me in this trial. It’s interesting that Benadryl could be the drug that saves me after all!
I’ll have the official radiology report in a couple of days but for now the news is good, minus the allergic reaction. I thought about taking a pic of my face in the bathroom mirror but thought better of it as the nurses ran in and out of my room trying to save me. Now I regret it.