Many of you have been asking and I’d rather point to this than describe this detailed procedure over and over. I’ll try and keep this colloquial. If anyone would like more depth I have some papers I can share. I just finished the first of my lengthy hospitalizations, which effectively allow mega high-dose chemo to be given without doing longterm damage to your heart, lungs, and other organs. I was clear from the start that I’d rather roll the dice than thrash my ability to perform in life. With that caveat, I’d deal with any sort of discomfort that would improve my chances.
I’ll be doing 4 cycles, 2 A cycles and 2 B cycles. Each are approximately one week in the hospital and two weeks out but it’s completely fluid, based on responses to the treatment. So far, I’m nailing it but there’s a long way to go. And, when I say nailing, it in no way implies it doesn’t suck. I’m fascinated by watching my body respond to whack but this is pretty f-ed up.
Followed by an autologous stem cell transplant. Explained simply in the link.
This is approximately three weeks in the hospital, followed by a long recovery that generally picks up steam after the first few weeks.
With early stage Mantle Cell Lymphoma, why would I choose such an invasive treatment?
The bottom line was that this is, by far, the most effective protocol for longterm remission. Granted, “long” is relative since it’s been used for less than a decade (though similar-style older treatments are less but still effective). In the latest paper (link here to abstract but I can mail anyone the full study who would like it), published after my diagnosis, this treatment regimen had the best numbers of all protocols. The only caveat was a 63% dropout rate due to its intensity. My doctor’s have been saying , “sounds like you’ve been training your whole life for this,” meaning they think I have a good chance of making the cut.
There are many newer, less invasive, options, many of which look promising. But none of them have longterm statistics or success rate quite as high as mine. Also, these more prophylactic-style treatments tend to cause mutation in the disease, meaning you don’t get to re-use them once they stop working. It seems better, especially since they are evolving rapidly, to wait until a recurrence happens and catch all the latest and greatest stuff. Cancers are started to be treated more like viruses. Dynamic uses of far less toxic drugs can often keeps cancers at bay, if you will. So, like many viruses, they can still exist in your system but never manifest into something life threatening. This is the future. It’s happening now, too, but as Dr. DeVos at UCLA said, “if you can buy yourself five or ten years we’ll be light years ahead of where we are now.”
Further stacking the odds in my favor is lifestyle. I’m actually think my penchant for pushing the body to its central nervous system overtrained state though experimentations with diet and exercise, may have a role in MCL, it’s pure conjecture at this point. Other than that one hiccup, I’m about as cancer adverse as anyone. I can do better, too, so I don’t mind increasing my odds at cancer (which chemo does) slightly because I feel I can offset it. In fact I like all the things minimize my risk, especially worrying less about work! I can always improve at channeling my inner Dude. “Is this a … what day is this?”
Since I run in hippie circles, a lot of friends seem to think eschewing treatment would be more my style. Hey, while I’m as earthy as most folks, and skip taking drugs for, well, almost everything, I am a firm believer in science. Make no mistake about it. Science is rad. So is living holistically with the natural environment. What I’m facing is a time for science, and I couldn’t be more all in. There are a lot of cancers where watch and wait is that smartest option, especially for those who will take on right lifestyle. MCL, with the markers mine is showing, is not one of them. It kills very, very quickly. No matter how much sprouted food, clean water, and cordyceps I consume, it won’t have an effect here. Anecdotally, I’m using the Steve Jobs template. The man with the most hippie resources on the planet couldn’t knocks his early-stage cancer down and admitted trying was a mistake. I’m listening.
Because of this I’ve ingested more chemicals in the last week than in the entirety of my life. And, somehow, I’m still alive. All of which reminds me of Lance Armstrong’s anti-dope defense tactic of “after what I’ve been through, why would I put drugs in my body?” because, as a person who’s always avoided drugs, I’m a lot more comfortable with them now. Shoot, after surviving intensive chemo you’d probably look at basic performance enhancers are being about as dangerous as candy. So now I can spend all my recovery time thinking about which races out there do I really want to win.