I came on this forum shortly after and started reading furiously. There must be something out there, some way, someone doing something, somewhere. I found out about Dr. Kemeny at Sloan and figured I'd give it a shot. Lined up my own appointment, sent the appropriate paperwork up and went for a consult without the blessing of my Moffitt doc. I was told I wouldn't survive the surgery, its too risky...etc etc. Sloan had different opinions of that. And low and behold, survive I did, had some pretty decent response with the HAI. Started feeling better, getting stronger. March of 2014 we had progression, some small tumors growing near some very important arteries in the liver. Sloan did what no one else would do....they cut those suckers out. A massive operation; entire right lobe, portion of left lobe, excised new baby tumor away from that artery. Dr. DeMatteo and apparently my own biology worked in my favor for once! The surgery was wildly successful. I was left with 4 very small tumors and a shiney new liver growing cancer free.
Two weeks ago we made the plunge and did a second liver resection. Removed the caudate and wedged out the last remaining tumors.
Had a scan yesterday....Dr. DeMatteo and Dr. Kemeny said those precious words we all want to hear. No Evidence of Disease. 27 months after my initial diagnosis, after being told there is nothing we can do, I am at the very least starting with a clean slate.
I want to say, fuck the numbers! I've read them, we all have, we all know what Stage IV means, what percentage recur and all that garbage. But for now, at this moment, I feel like I finally have a chance at more time.
Thanks for listening to my rant
Just wanted to type something, some brief outline, put into words.
