See that line in the photo that says "From baseline," and then see underneath where it reads "-100.00?" That is the miracle news I received yesterday April 1 2019! A small part of me is waiting to get the call that this was an April Fool’s joke but no one would be that cruel so I know it’s for real. I started writing this on a train home from a nine-hour day at Memorial Sloan Kettering in NYC where, in between needles, IVs, EKGs and scans, I got the most amazing news of my life at 12:24pm. It went something like this … A trial doctor whom I'd never met before walked in and, looking very neutral, said “We had two radiologists look at this and I’ve looked it over three times myself and well..." Now, at this point I felt like I was going to actually vomit because I thought he was about to say they found a new tumor or it grew and I was off the trial. But instead he said this ... "Your recent scans show no evidence of disease.” To which I replied "WHAT? WHAT did you say?! I'm NED? I'm NED?" I am apparently prone to repetition in states of extreme joy and shock. (NED is short for no evidence of disease) - the magic acronym that every cancer patient vies for but does not actually think they will ever see with stage 4 cancer. Last summer, when my cancer spread very aggressively in a matter of weeks when my last trial failed - including spreading to multiple tumors in my brain, I didn’t even know if I’d be alive right now never mind NED. He handed me that piece of paper in the photo. I put it up in front of my face as tears welled over and I said, "Sorry, I just need a minute." I think I then proceeded to repeat myself several more times making sure I really understood exactly what he was saying.
How is this possible and what does it actually mean? Great questions, thanks for thinking them :). Well, although I hit the crap cancer lottery having cancer at all, then having stage 4, then having my cancer mutate to one of the most aggressive and difficult to treat kinds of breast cancer - triple negative, this time my luck went in equal measure the other way. It turns out that through genomic sequencing testing (IMPACT testing) my doctors discovered that a main driver of my cancer is a rare mutation (N-TRK fusion) that is seen in less than 1% of tumors and even more infrequently in common cancers like breast. BUT, I HAVE IT! That is not where my luck ends though because apparently it was a strong driver and it was everywhere the cancer spread - my brain, bones, lymph nodes, adrenals and liver. My cancer seems to share my philosophy on life of "Go big or go home." Miraculously, some godlike brilliant researchers developed a drug that targets this exact mutation and there just happened to be a trial for which I became eligible for at MSKCC - the hospital where I am treated in NYC, at the time I needed it. A few years prior - before this discovery - this finding wouldn't have mattered - I would not have lived long enough to benefit. That is how actually lucky this whole turn of events is and how insanely important it is to keep supporting brilliant researchers who are focused on metastasis. This does not mean there is a cure for cancer or even that MY cancer is "cured." It means that I basically hit the ultimate Powerball lottery of genetic mutations and found a drug that put my cancer into remission, hopefully for a very very long time. I am considered a CR (complete responder) to this amazing trial and it happened within eight months.
To explain what remission means, at least as I understand it, is that I could remain NED for as long as this drug works and as long as any microscopic cancer cells that may still exist in me do not mutate and outsmart it - causing resistance. I will be on this drug, which I take orally every 12 hours, for the rest of my life or until it stops working. I feel great on it and can live a full life taking it. Because this mutation is on the pain receptors - sometimes my whole body is in pain right before my next dose but then it goes away quickly and I can manage this and a slightly reduced immune system no problem. So, while stage 4 cancer is not like a flu where it can just be “gone” or “cured,” this is as good as it gets being NED and I'll of course remain on the trial with regular monitoring. I don't really have the words to express the overwhelming gratitude for my oncologist Dr. Andy Seidman, the researchers we fund Dr. Nikhil Wagle and Dr. Sarat Chandarlapaty and their teams, and my trial doctors and their team who are making this possible - Dr. Andrew Drilon and Dr. Alison Schram - and every other incredible human being involved with running this trial, developing, and manufacturing this drug, and for foundations like Alex's Lemonade Stand that funded early studies on this - that are giving me more time to watch my children grow up, laugh with my friends and family, travel to see more of this amazing planet, write, do arial yoga and walk on the beach. I think of all the long nights these doctors must have spent studying in high school, college, medical school, and for their boards, and all the long hours and days they sacrificed time doing other things to be in a lab developing this drug. I think of the researchers we fund, my oncologist, Dr. Andy Seidman and all the other researchers and oncologists out there doing this work right now and I just want them to know how very worth every single second of their time was and is. If they knew. If they only knew, that I am writing this with tears of gratitude streaming down my face. If they knew and could feel what it feels like to give a 13 year old girl and her 10 year old brother more time with their mother and even a moment of relief from the constant stress they live with - I just hope they know what this means to me and every patient they save because there are no words. Thank you, is an insufficient start. I want to support their great efforts in the only way I know how: To continue to give them as much money as possible, as soon as possible, to keep doing what they do best.
This drug is a monumental step in cancer progress but, it only benefits <1% of the cancer population and even then – many people develop resistance to it and I may eventually as well. This is important to understand as there is often hype and misleading headlines that come out leading people to believe that someone has found the cure for cancer when they really just saved a few unrelated mice. The problem with this is that needed research then does not get funded. I can assure you all, there is still no cure for cancer. This is a GIANT step in the right direction but we need more drugs like this to identify and treat the other 99% of patients. Research is the only way to get there.
The gratitude I feel for this current outcome is overwhelming and I have a renewed sense of commitment to put my time and energy into this foundation (The Cancer Couch) that is raising money exclusively for MBC research. We need more drugs like this. Every cancer patient deserves to have the day I had.