“Brilliant”

That’s how Dr Rajan described my scan results when I ran into him in the NCI cafeteria between appointments. My team was so excited, he had to tell me right away. And they were probably a little disappointed at my reaction, which was: “Cool. What does that mean?” I’ve learned, particularly recently, not to read too much in to test results, not to project what I want in to what I hear. Being a research doc, Dr Rajan simply said something along the lines of “You had a good response to the medication.” I said That was great, I’d see him in an hour.

You have to see where I have been, mentally and emotionally to understand my underwhelming response to what sounds like exactly what I’ve been hoping for. I had been delayed three weeks between the two cycles of Sutent. My body hated the drug. My Neutrafils refused to come back until 3 days (out of 21) before I would have been kicked out of the trial (sorry for the wording, Nurse Linda). I was already setting in to the mindset that Sutent may not be the drug for me; that it was about time to start re-investigating a PD-1 or PD-L1 trial. I also had a bet that I wouldn’t hit my white blood cell count anyway. Again, making plans are the best way ro make God laugh.

In the three weeks since I was last at the NCI, I have been doing everything I thought MIGHT help boost my whites. I have been taking B12 supplements, eating more protein than I’d like, exercising, and getting acupuncture. I have even tried cupping, which stresses the body some, hopefully stimulating a WBC response. All this made me feel like I was doing SOMETHING. Not only was there nothing I could do to up the odds of Sutent shrinking my tumors, I didn’t even know if that was happening. I could be fighting to stay in a trial that wasn’t even extending my life. This NCI visit was weighted down with expectation and dread and resignation and hope.

First, there was the ECHO cardiogram. I have no worries about my heart health. I don’t mind these appointments, thiugh. It’s fascinating and weird to watch your own heart beat.. This was followed by my labs… the blood panel that has been just a bit of a nemesis for me the last few months. Then it was off to the CT scan. That’s when we find out if the Sutent is doung what it’s supposed to. As I waited for my 2:15 confab with Dr Rajan, I checked my email. He’d sent me a note saying that my blood counts look good. My whites were present in acceptable numbers. (Later, another doc said, “Your counts are great….. Well, not great exactly, but good enough.” There’s no exaggeration in clinical research.) Everyone is pleased, and I have already won my bet.

This is where I see the doc and Nurse Susan in the line for Indian food in the surprisingly good NCI cafeteria. I am cautiously optimistic about what the CT is showing but still not totally understanding… Then I see this email from Dr Rajan :

“The CT looks very impressive! I did a rough calculation and we get a reduction in size by about 40%. But honestly this is an underestimate based on the way we are supposed to measure things. I think in reality the reduction in tumor volume is almost twice as much. Let’s wait for the radiologist’s interpretation and see if they confirm are initial findings.

We are all very happy for you!

Arun”

There is no misinterpreting that. The Sutent is working better than anyone could have possibly imagined. Dr Rajan says my tumor response may be the most dramatic in this arm of the trial so far (to which I said, “Well, I’m very competitive!). He now can hardly see some of the tumors; they are all going in the right direction…AWAY. I got my third cycle of drugs and am now back on my way home to Park City.

We don’t know if the rate of response to the Sutent will continue at this pace. We don’t know if the tumors will stop responding or when that might  happen. The initial dramatic response portends nothing. Except this: My summer and, truthfully, my life, just opened back up for all the glorious possibilities that I can cram in. I won’t squander the results of all those smart people’s hard work and dedication by not living every minute as if it’s a gift, which it  is. I will also continue to crusade so that other people can experience the same reveal that I have experienced. So grateful. So hopeful. It is nothing short of BRILLIANT.