The night before the cell (TIL) infusion my immunotherapy fellow arrived in my room to see how I was doing and to ask if I had any questions. He explained that many people experience shortness of breath during the infusion because the cells' first destination, due to human anatomy, is the lungs. He said the infusion itself would take about 20 minutes (or 30...sorry, details fuzzy!). I just stared at him a moment, then:
Me: I'm really the first?
Doc: You are!
Me: That is really cool.
Doc: It really is.
We have these deep conversations, my fellow and I. He left for the night, and I fell to sleep offering prayers of thanksgiving. It was on December 19th (my birthday) that I made the first phone call to NIH, and now here I was six months later, awaiting the event that I had hoped and prayed for--and begged others to pray for. It was going to happen the very next day, July 1.
In the morning the attending physician and his entourage walked in and asked, "Are you excited for today?!" to which I responded something lame that I don't recall. "I'll take that as a 'yes'", he said.
Around noon the research nurse came in to explain what would happen. I drew "Welcome Home TILs--Do your thing!" in big letters on the dry erase board, and set to work on creating a play list for the infusion. This was advice given to me by K., another CRC patient who had received TIL therapy just a couple of weeks before.†
The shift nurse came in, and a bag with 148-billion of my own tumor infiltrating lymphocytes was hung on the I.V. pole. The bag was designed in a way that funneled the cells toward the opening so that the bag could be emptied as completely as possible.
My playlist started with Queen's Don't Stop Me Now, which the nurse appreciated (ooh! Party time!). Anything by Queen reminds me of Dennis, a brother of mine who died at age 29 (not cancer). He was all music, all the time. Next up on the playlist was Frankenstein by the Edgar Winter Group. This one reminds me of another brother, Jay, who also died (also not cancer) way too young. (I remember one summer in particular when he'd call the radio station to request this song, just about every day.) Next were Coldplay's Viva La Vida, Counting Crow's Big Yellow Taxi, and to finish, two by Matt Maher: Alive Again, and Your Grace Is Enough.
I experienced no side-effects whatsoever as the cells were going in.
After the infusion, the nurse brought in a Pepperidge Farms Chocololate Fudge cake! She presented the cake to Patrick and me with the greeting, "This is to celebrate the birthday of your new cells!" It was a charming gesture. I was only able to eat a couple of very small bites, because I was still nauseous, but: chocolate!
After a few hours, the first dose of IL-2 was administered. It takes 15 minutes or so for the infusion. This drug is the one I was most concerned about--even moreso than the cyclophosphamide. Side effects for IL-2 are many and unpredictable. Chief among them, I was told, are hallucinations and vivid dreams. Fevers and chills are common, and I was told to expect to be asked questions to test my awareness throughout the day--questions like: What day is it? or Who is the President?
Preceding the infusion of IL-2 would be I.V. antibiotics, I.V. anti-nausea meds, and oral doses of Tylenol and a couple of little green pills whose name I forgot (indocin?), prescribed to reduce inflammation. I'd also be on I.V. fluids pre- and post- infusion of the IL-2.
I had heard stories about IL-2. People sometimes react poorly to the first infusion. I wondered where the doctors were. "Shouldn't they be in the room? Maybe they're in the hallway," I thought. "Maybe they don't want to scare me..."
For the first hour or so after the infusion stopped, I felt no side effects. About thirty minutes after that, I got dizzy and felt hot. I kept a cold, wet washcloth near me and alternated using it on the back of my neck or across my forehead. That helped a lot. My vital signs were measured several times. My blood pressure dropped a bit, but not to dangerous levels. I slept. When I woke, I was still a bit dizzy, but feeling normal otherwise. I was able to eat a few bites of dinner for the first time in many days.
More oral meds were brought--four pills. These drugs were standing in for my depleted immune system.
Around 11:00 PM on Day 0, the second dose of IL-2 was hung. Whenever this drug, or any of the chemo drugs, or the cells themselves are hung, a second nurse is called in to ensure that no oversights are made. I'm asked each time for my name and date of birth. They scan my badge, the drugs are scanned, and then the primary nurse starts the infusion. Once the fluid starts to drip, I'm left alone to sleep.
I did not have any dreams or hallucinations! I was kind of surprised, because during the nights leading up to this one, I had had some vivid dreams. When the nurse came into my room at 5:00 AM to draw the requisite vials of blood, she asked how I felt in her sweet, Southern drawl.
Nurse: How you doin'? You don't look like any IL-2 patient I ever saw.
Me: I feel great. I slept really well.
Nurse: No side effects? No nausea? Dizziness? Fever? Chills?
Me: Nope. It was easier than the first dose.
Nurse: Well, I'm guessin' the doctor is goin' to OK the start of dose 3 then! Great job!
Me [in my head]: I had nothing to do with it. I just laid here.
She came in a few minutes later and related the exchange she had just had with the on-call fellow. "He said, 'No side effects? Are you kiddin' me?'". We laughed.
So far, so good.
Eventually, they say my body will show signs that it is time to stop the IL-2. I asked what signs specifically, and one of the fellows mentioned fluid retention, rash, hallucinations, or other things. "Each case is different. We are watching everything though, and we will know if something changes," he assured me.
I feel that I am in very good hands here at NIH. I am able to skype with the kids almost every night, which keeps my spirits up. Oh, how I miss my "babies"!
Day 1 of the trial is underway as I type...
†Added later: K. did not respond to TIL therapy. Sadly, she died in February, 2016. K. was so very enthusiastic about contributing to medical science--it was impossible to not be caught up in her excitement. I miss her.