Mar 02, 2014 - 1:11 pm
Hi everyone! I hope you are all doing well! We think about all of you a lot, but took a bit of a break from the forum. I think I last updated after the doctors tried treating for testicular cancer and it didn't work. Blkjak remains a bit of a mystery since his kidney tumor is so small yet has spread so much. They then tried treating it with a chemo protocol for collecting duct carcinoma, which didn't work. Tumors everywhere have grown and there are new tumors in the liver and lungs. For the last six weeks he has been on a chemo regimen for bladder cancer. The thought is, based on the type of cells, this might be a transitional cell cancer. Another rare kidney cancer variant. He has a ct scan tomorrow. I don't know what happens next if this isn't working. We discussed the possibility of going back to traditional rcc meds, so everolimus might be next.
We are coming up on the one year mark in a couple of weeks. Nothing in this journey has been "typical" and I still feel like there has to be a better answer. But I don't know what that is. We have had the pathology re-reviewed a couple of times, and it's still so unclear. In the meantime, we try to focus on living and moving forward as much as we can. We got back two weeks ago from a week long trip to Disney World with the kids. It was fun and such a great break from reality.
So that's the scoop from our world!