Nov 07, 2013 - 10:43 pm
Hello, friends. First, I'm sorry that I don't get here more often. I always worry that you all worry when you don't hear from one of us for a while. Be assured that if you don't hear from me, I am living my life to the fullest, readily forgetting that I have cancer, and doing generally well. I remind everyone on the board to feel free to contact me directly at my email, which i linked to my account. I've also asked my wife to let you all know if I am wrong and don't live all the years God has planned for me. Should keep me covered and feeling less guilty.
Anyway, I wanted to give you update. If you recall, my initial CT indicated Grade 4 Stage 4 mRCC / clear cell / sarcomatoid features with metastesis as follows: innumable nodules in the lungs, 4cm mass (ish?) in my right (remaning) kidney, a lesion in my right adrenal gland, and a 2cm mass at my T3 verterbra. 6 weeks following my radical neph + 16 lymph nodes and a slice of my spleen I started on Sutent 50mg 28 on / 14 off-day cycle. That was July, 2012. So if I do my math I'm on my 12 cycle about 17 months down the road. My CT Scan from ~8 months ago showed remarkable progress: No local recurrences, Lungs classified as "Normal", mass in right kidney did not appear, right adrenal down in size to smaller than 1x2cm, and the spinal lesion having shrunk to this "flat thing" about 1.7 x .7 cm.
My following 2 scans were both "stable". Doc will put me on 6 month schedule if the next one on 12/23 is stable as well.
He has discussed for the past 3 months I've seen him (3 times) about "breakthroughs" and "changes to how they are looking at this disease" and has told me that while he is a scientist and needs years of data, that he will allow me to "expect" to be in a durable, complete remission before too long. He would say cure, but there is not enough evidence and data yet. He is talking about PD-1, its variants, and the work MSKCC is doing on combinations of existing therapies that are having amazing results. Not changing my plan now, as I am in what they have finally classified as "in remission" on Sutent. Not a CR - yet - but remission nonetheless.
I have raised my hope to expectation, per doctor's orders!
Otherwise, things are good. Working full time, sometimes too many hours, trying to get Chistmas shopping done in the next 2 weeks, and looking forward to the last part of a year that was, on balance, a hell of a lot better than the one before it, even with its own share of tragedy.
Live every day, don't get consumed by this thing, use G. White's Guided Imagery program, and thrive, thrive, thrive!!!
All the best,