I've started my fifteenth month of treatment. I'd have to say at this point it's not really treatment anymore. It's prevention. What we see isn't getting any smaller. It's not growing or spreading. It's stable.
The question remains, "Am I going to be healed, or is this as good as it gets?" Am I just waiting for inevitable spread which would eventually harm me beyond repair?
There are a handful of viable treatments I could try. There are even some things that aren't quite yet approved, but worth getting my hands on.
My course really depends on which doctor I want to believe. In which doctor do I put my trust?
One doctor had a frank conversation with me just a few months ago. He stated that the median lifespan of someone in my condition is about 12 months. We could give ourselves a +4 since we're using Votrient, my current treatment. So, 16 months. My metastatic diagnosis started in Feb 2014, if we're using the best case scenario dates. This doctor didn't even want to talk about a 3-year lifespan until we were able to effectively deal with the cancer we could see. He also gave me a 100% chance of having kidney cancer cells floating around my body. A dangerous situation.
One doctor thinks I am doing well. If he didn't know I had cancer in my medical history, he might overlook the lesions on my MRI. He thinks I should consider lowering my Votrient dosage to increase my quality of life. I might even want to consider reducing my dosage to zero.
Most of my doctors won't consider a different treatment path until we see growth or spread. I should keep taking the Votrient until it stops working. (And it will stop working.) Once we see material growth or spread, we can consider an alternative.
Waiting seems incredible passive to me.
I also know that each day with Votrient is generally not a fun day. I can tolerate the meds some days. No days are "great" and most days are below average. Some are utterly awful. I really don't know how much longer I have it in me to keep taking this drug. I also think it's keeping the cancer from growing and spreading, but that's it.
A friend shared his thoughts on this with me last week. "Stable is dying." I immediately knew what he meant. I am driving down a road. I have no brakes. There is a cliff in the distance. But I am stable. Everything is ok today.
Stable means dying.
Here's what I plan on doing:
Genomics - I am having my cancer's genome sequenced. There's a small chance we could see something that would help direct my best path for treatment.
PD-1 or PDL-1 - "Programmed cell death protein 1" Now that's the way to label a treatment! This treatment is mostly in late-stage trials, but a few were approved for use in the U.S. in the last 6 months. I just need to find a doctor that will get me in the program. We'd need to see if I can take both treatments concurrently.
Vaccine - The University of New Mexico currently has a Phase 3 trial testing a personalized vaccine for metastatic kidney cancer.
Wow. That's some cool stuff.
Which Doctor?
I guess whichever one wants to sign up to treat me. Any takers? Call me.
