Aug 20, 2013 - 11:47 pm
I always feel the need for apologizing when I post to the board. I should be on here more, I can add more value. I will try to do better at that, but I do make sure that at significant moments that I update you all. I promise to do that at minimum, and welcome any one of you to contact me via email. I believe you can do that via the profiles page.
History for those who don't know me. 43, M, dad to 2 girls (8 and 12), Diag. 3/2012 mRCC Grade 4 Stage 4 with numerous mets to other kidney, both adrenal glands, lymph nodes, spleen and worst, what was characterized as "innumerable lesions to the lungs". Had surgery 5/25/12 to remove left kidney and assorted other parts. Started Sutent 50 mg 4 on 2 off around July, 2012, so I'm on my 10th or 11th cycle.
Had my scan yesterday and I was declared stable! Yay! Now, again for those who don't know me . . .
My last scan 4 months ago showed Stable with some improvement. "Stable" on that scan referred back the prior scan, 3 months earlier, which showed, or more importantly did NOT show any evidence of mets in my right kidney or my lungs. My lungs were declared "normal" by the radiologist. The mass long my spine had shrunk to a "flat thing, like a little pancake" and the last remaining met was in my right adrenal gland, which was stable at 1.2 x 1.0 cm.
Median for me was 8 months. That was well over a year ago that I was diagnosed. Believe me, I'm nowhere near death. In fact, my Oncologist at MSK is researching next steps for me, be that because the Sutent stops working or because he's confident he can significantly improve my state or possibly CURE me. Last time he specified a time frame, he said 3 to 4 years. That was six months ago. He says the cure will be in immuno-therapy.
I have no doubt that with the amazing speed of progress in RCC research and treatments, and courageous doctors and patients, no, survivors, driving together towards a cure; continuing to stay positive and confident that this is passing and will soon be behind me; and faith, my own but much more so those around me. So important to build your team and not do it alone, then we will see the day when we're all just friends, and not joined only by cancer.
All the best, warmest thoughts and prayers,
Long Island, NY