Feb 27, 2013 - 5:45 pm
This post is primarily for newer members and lurkers. Those in despair and scared to death. Desparate for hope. I'll humor veteran members and will even use "L,s".
I had been running, weight training, golfing and motorcycle riding for years. My joke was that I was going to be in the best shape of my life when I died. I was 58 y.o. Little did I know that in March 2011 with no warning, I began peeing blood faster than a race horse. Doubled over in pain. A couple days later my left kidney was removed due to cancer. Soon, I found out that I had mets through out my lungs, liver and chest lymph nodes. (Bone mets were soon to follow). I was told that maybe I would make it to see spring 2012. Scared? Hell yeah! My local oncologist said she could not help me. Next cancer center said good luck. Next one couldn't help either. I tried Yale New Haven Smilow Cancer center. I begged to be admitted. "Please, please, let me try HDIL-2." Dr. Harriet Kluger offered me a counter proposal. (Harriet is my God.) It seems they had a spot open in the clinical trial of MDX-1106, or anti-PD1. She said it held much promise. I would need to have many scans, blood work and biopsies to see if I would qualify. Besides, I could get HDIL-2 if I didn't qualify. (what the hell was MDX-1106? I never heard of it.)
I said, "Hell yeah!.........." Guess what? I QUALIFIED!!!!!! One of the few people in this country who met the criteria.....(What is important here is that NO OTHER ONCOLOGIST EVER mentioned anything like this to me!.......REMEMBER THIS!!!!!!!!!! it could save your life!
Also keep in mind that had I accepted an adjuvant therapy before this point, I would not be eligible for this trial.
I got my first infusion about the start of 2012. By now I could barely walk and was living on percocets just to get around the house, due to bone pain in my spine and right hip.
By spring the pain was GONE! By summer I was back to full running, weight training, golf and motorcycle riding.
I recieve infusions every 3 weeks. Today was infusion number 22 !!!!!!!!!!!
I've probably had 20+/- tumors DISAPPEAR!!!!!. I am having issues with some mets in my spine and ribs which are a little more resistant. I have had some radiation and am also recieving zometa to work on those. I do have some pain but BIG DEAL! I'm in better shape than most. Next month I'll be 61 y.o., and by previous estimates, I'll have been dead a year! Now, I am being treated for what is essentially a chronic disease. Sort of like a diabetic, or heart patient. Could you live with that? HELL YEAH!
So for all you freightened people not knowing where to turn, DO YOUR RESEARCH! Question your Drs., Learn about your options. And please know that this renal cell carcinoma does not have to be a death sentence for everyone.
Scarey? yep. I may not become completely cancer free and doubt if I ever will. Will everyone be as lucky as me? I doubt that too. But what saved my life was the continued effort to search options. I knew little about kidney cancer when I started. I know a little more now. But not much. That's OK. Because next year I will know more. And maybe, just maybe, that next great treatment and cure will be available just around the corner. And remember it will only work for you if you are here to benefit from it. So stay tough and fight my friends.