Yesterday I had my second t-cell infusion (30%) which was very successful. I started having cold chills, some body aches, and low grade fevers towards the end of the evening, but by morning all had subsided. I expected to feel a lot worse considering I received a higher dose than the first day (which was 10%). So, I was looking forward to receiving my final 60%.
This morning my team at Penn came in and informed me that last nights fevers were enough for them to hold the remaining 60% and they were discussing with the PI and study team whether or not to move forward with giving me the final dose. This worried me because I really wanted to receive 100% of my t-cells this time. In my previous CART19 trial I only received 10% of my cells – but that was due to the fact that I hit very high fevers with 105.8 being the peak.
The study team just came to inform me that they made a decision to move forward with the final dose today, but only if I do not spike a fever before noon. So I will sit here and patiently wait. Updates to come!
My first infusion of T-cells ended yesterday at 11:11 AM. We patiently waited for “the storm” which is when your fever spikes – an indication the t-cells are attacking the cancer cells. Around 5:00 PM, I had some cold chills and spiked a mild fever (99 – 100), but this morning my temperature returned to normal and I feel fine.
What this means is that today I will be receiving a second infusion of t-cells!!! This is rather exciting to me because I did not receive a second infusion of t-cells during my last clinical trial. Although there is no evidence to support this, it is a possibility that only receiving one infusion of t-cells led to my relapse. I guess this is the whole point of clinical trials – to figure out what and why certain things do or do not work!
My second infusion of t-cells should take place around the same time today. If my reaction is similar to last night’s reaction (no fevers over 100.4), then I will receive my third and final infusion of t-cells tomorrow.
The big difference between my CART19 trial two years ago and this current CART22 trial is that, I spiked a fever and had a reaction after my first infusion with CART19 which means that I only received 10% of my t-cells last time. This is another factor that could have led to my relapse; however, this is just speculation as we do not have enough clinical data to determine if this could be true. So today, I will receive an additional 30% of t-cells and if my reaction is mild (as it was last night), I will receive the remainder (60%) of my cells tomorrow.
I don’t know if we want me to react to this next 30% of t-cells I receive today because it means that I will not receive the final 60% of my t-cells tomorrow – but then again, this is the point of being in a controlled study!
I look forward to providing updates as I patiently wait for “the storm” to happen and my cancer disappear!
This week has been nothing shy of an emotional rollercoaster. In my last post just a few days ago I had a change of heart – I cancelled my chemo appointment and decided I was going to stop treatment. I left work at noon and went straight home rather than going to UPenn. I sat on my bed and cried. I cried and cried. Tuesday night felt like it was never ending.
But the next 48 hours brought me what I like to call, the gift of inspiration. My last post generated some responses and prayers from quite a few people. I don’t think I realized how many people I’ve inspired along the way through this journey. The truth is, it’s all of you who inspire me to keep going.
Tom and Kari Whitehead came into town this week and they took me out to a lovely dinner Wednesday night. We had such an amazing evening at this little boutique-like, Italian restaurant in Center City. The Whitehead’s have been influential and very supportive throughout my CAR T journey as well as survivorship. We talked about a lot of things, including potential treatment options. But we also talked about Tom’s whispers and how he had a vision (he had similar visions when his daughter, Emily was fighting cancer) that I was going to get my T Cell therapy at Penn just two years ago. I think I’ll touch on the whispers in another blog post… and for now, focus on purpose. Sitting across from the Whitehead’s on Wednesday night at dinner, I was reminded of life’s purpose. And although I may not understand what exactly my purpose is, I do know that my purpose had everything to do with where I was and how I was feeling in that exact moment… sitting across from the Whitehead’s at dinner. Not all of you will understand the meaning of this next statement but for those of you who do, you will smile. I want the Whitehead family to know that:
Yesterday, I had a doctor appointment scheduled with my doctor and PI at the University of Pennsylvania to discuss more details about the CART22 trial. I will post updates after I here back from my doctor at Penn.
Not all days are good. No matter how strong we are. We will have bad days. This is so true. The following is a link to the song that inspired me the most throughout this week. Sometimes I feel like giving up, but I just can’t, it isn’t in my blood. Listen to it here:
IN MY BLOOD – Shawn Mendes
I want to thank all of you for giving me the gift of inspiration for you have inspired me to keep fighting.