Alright friends, here's the lowdown...back in October, we found out that Kenny's glioma was once again growing. With the hope that it was growing more slowly, they moved his scans up from every six months to every three. Unfortunately, at the scan in January, they discovered that the growth is happening quickly enough to see after only 3 months. BOO!!!
They let us know that his options, for now, are radiation therapy, or clinical trial drugs. Both sounded pretty scary. However, after lots of research, and information thrown our way, the clinical trial sounded pretty promising. At the very least, attempting it would save him radiation for the time being. The reason his neuro oncologist would really like to push off radiation is because it's a one shot deal...and even then, he said, the results were unpredictable (as in, it may only stop growth for a matter of months or a few years). So here we found ourselves, 2 years after we thought we'd be done talking about it (albeit foolishly), and making more big decisions.
So this past Friday, after multiple trips to Sloan, a few scans and lots of talking about it, Kenny signed on the dotted line. He is now on the fast track to beginning the clinical trial...fast as in he begins on TUESDAY. Yes...as in two days from now. Friday became a whirlwind of meeting doctors, researchers, trial RN's, Oncology pharmacists, and a ton of pre-trial testing (blood, 2 ekg's, echo cardio gram, the works...). By the time we got home Friday night, we were wiped, yesterday we were slightly more awake, and today we're feeling human and ready to prepare. It's going to be an intense 3 month regimen of appointments at Sloan to monitor his body's response, and constant testing to make sure his body is handling it all well. And if any of you know Ken, you know how much he LOVES needles (HA!). It will be a lot of work for Ken, our little family, and the amazing family we have surrounding us that are helping us in every way possible (from kid sitting to massive amounts of moral support). But in the end we're hoping for a big payoff. Nothing ventured, nothing gained, right?
Now for the science-y part of the tale. The hope of this medication is that it stops tumor growth (and maybe even shrink it a little). How?? Well, 70% of Gliomas have recently (recently as in the last 5-7 years) been found to contain a genetic mutation called IDH1. Not only is it in Gliomas, but in a lot of cancers...liver cancer, sarcoma, and a close relative of IDH1 (named IDH2) exists in leukemia. Now, to anyone with a very non science background (myself HUGELY included in this), this is all very confusing, but I'll try my best to keep it in"non science genius" words.
This mutation is a very curious thing. I thought about explaining how the WHOLE thing works, but it would extend beyond my scientific reach to explain it correctly. But the bottom line is that this mutation preys on cells, in essence, that are suffering an identity crisis. These are "primitive" cells that never quite develop, and the mutation helps it develop into cancer/tumors (this is simplifying the concept in a big way, but it's the gist).
Now, the medicine they're testing is promising in some very key ways. Unlike typical chemotherapy, this drug is considered a biologic. As in, it's purpose and intention is not to kill a single cell, but to heal the cells (or in this instance, force them to mature into healthy cells). That's right...the premise and hope for this medication is to treat cancer without killing it. Pretty crazy, right??? Not only that, but it's considered a targeted therapy. Whereas typical chemo would be administered and effect the body systemically (as a whole), this targets only the mutation. We have high hopes for this medication to work, but trying to keep level heads since it's still a very new concept. However, in leukemia patients last year, the clinical trial was found to put almost 50% of patients tested in full remission, without damaging their bone marrow.
I have plenty more I could explain, but Kenny has informed me that what I've said already has probably bored people to tears, so I'll keep the science stuff to a minimum for the time being. However, if you're at all interested, please feel free to read some of the below articles on the topic (he is participating in the trial by Agios).
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=1829945
http://www.agios.com/pipeline-idh.php
As for every day life, we just keep on, keeping on. If anything the last couple of years, we've learned to live life in between appointments. What else can we do? I'll check in with, well, lots of stuff coming up. It's not exactly how I wanted to get back into writing, but as those brilliant Rolling Stones say, "You can't always get what you want, but if you try sometimes, you find you get what you need." We need some good vibes friends, so send 'em if you got 'em!
