Wow. What a journey.

My brain is still foggy and tired from treatment but the people want an update and I want to give the people what they want!

I’ll start with the 5 days of high-dose lymphocyte-depleting chemo. Luckily, these were outpatient days but the first two were 12 hour days. I received cyclophosphamide and fludarabine. Cyclophosphamide made me feel nauseous and tired. Luckily, the last three days were just fludarabine, which I didn’t find to be too bad. 

TT took care of me during the beginning of the trip, and Will took over halfway through the chemo. Shortly after the chemo, I checked into inpatient for the big treatment. I was nervous but mostly felt prepared and excited, because I’ve been waiting so long for this. 

Geniuses at the lab were able to prepare three bags of my cells with roughly 14 billion cells in each bag. They even let me hold the cell bag, which was a weird milky color and which I was nervous to hold. A super sweet lady offered to bless the cells and I’m so glad we said yes. She wrote a personalized message that really resonated and even made Will cry, which makes me cry thinking about that. As you can imagine, there were a lot of protocols and a lot of people in the room. The moment felt so monumental probably because of the buildup to get to this moment, and what it could do for me. 

My first reaction was sneezing because of the preservative which I thought was pretty funny. My nurse practitioner told me my official side effects from the TILs started about 47 minutes after the infusion. Pretty quick. The worst side effects were the rigors and chills followed by the nausea and vomiting and an increased heart rate, making it hard to sleep. My nurses were great about giving me meds to counteract these side effects as best they could. 

A few hours after the TIL infusion, we began the IL-2 infusions. There were a total of 6, and good news, I managed to get through all 6 which everyone was happy about. The IL-2 is to help stimulate the lymphocytes and immune system. 

I was prepared for the worst when it came to side effects, but the staff kept reiterating that I was handling the treatment really well. The rigors, nausea, vomiting, elevated heart rate (my resting heart rate was about 120), feelings of sleeplessness and weakness were certainly hard but I'm grateful I didn't have anything more severe like fluid in the lungs. 

We were inpatient for 6 days but it felt like a lifetime. Will entertained me with drawings, dances, and sports betting. 

About halfway through the inpatient, my mom took over as the caregiver. 6 days probably sounds so short and the staff assured me things were going really well but I was going nuts. The small window didn’t open; I wasn’t allowed to leave the hallway, and I felt so restless probably because of my heart rate and not sleeping much. 

When I was discharged as soon as we left the inpatient hallway, I could feel a breeze and fresh air like I’ve never felt before. We had the windows down on the way home and when we got to the apartment, we just sat on a bench by a pond listening to the birds and the breeze. Needless to say, it felt so damn good to be outpatient. 

Although, I enjoyed that little bit of high of getting out of the hospital, I still go in everyday for labs and medications which is no problem. When you look at my blood work, it says “critical” for just about everything, which is to be expected. At the appointments, they’ll administer a WBC shot, platelet infusion, blood transfusion, magnesium, really whatever is needed for that day. My blood counts are so low that I can’t do anything that could possibly lead to an infection, like flossing and cutting my nails. As you can imagine, you feel like shit with such low counts. I feel very fatigued and tired and have a rash that luckily isn’t itchy.  My counts are slowly creeping up but it’s going to take some time. 

Further down the line I can expect research appointments, such as a needle biopsy and apheresis, my central line removal, as well as my first post-TIL nivolumab (immunotherapy) infusion. I’ll likely be here until the 3rd week of February and if things continue to go well, I can finish my year of nivolumab infusions in Denver. I don't think I'll know for a month or two whether the treatment is working, which is a little different from treatments I've had in the past. 

(Little side tangent for my oncogene NSCLC friends: I had scans right before my TIL treatment and was kind of surprised by the results. I believe the idea was to prove I don’t respond to nivolumab by itself but the scans showed some areas that decreased and some that increased. My overall tumor bulk was down a little which surprised me since I expected everything to grow. Also surprising was that pathology came back on my lymph node showing a TPS score of 90. Might be useful information for someone out there.)

Nervously holding my milky bag of cells. 

 

Will's drawing. He said you can either envision it as cancer cells leaving the body or as an exorcism. 

    

My hair started to fall out quickly two weeks after the chemo. This lovely pile was from after brushing it just one time. 

Hot GI Jane look. Having my hair shaved was not at all as emotional as I thought it would be. It was harder having the clumps come out every morning so this shave needed to happen. Will got a buzz cut in solidarity which made me smile. 

Hopefully my blood continues to improve and I continue to feel stronger and overall better. I still can't thank you all enough for the love, prayers, and support. From a practical standpoint, you have made the trial possible by helping me afford nearby lodging, airfare, and other expenses. I continue to feel such gratitude for you all. Thank you!

-Koko, Cor, CoreFore, Corey