It’s a difficult thing to hear that your chances of a 5 year remission are worse than a coin toss. When everyone around you has been so positive, the inner mathematician keeps whispering “those aren’t very good odds”. Granted, I’ve bet on worse odds. But still.
What am I talking about?
Well, just about all of my tests have come back. They all show that I am a 100% genetically normal 27 year old male. Not that my male-ness or age were in question. But I have no mutations, positive or negative.
The big one that I didn’t want to have was FLT3. If you have that mutation, they know without a shadow of a doubt that additional chemo after first remission does not give you a cure. So if you have it, 100% of the time, you get a stem cell transplant.
There are two other major ones, one of which is called NPM1, and the other I forget. They are both characterized by a very positive response to additional chemo, and actually have a more negative response to stem cell. These mutations generally say just stick with the battery of chemo after first remission, and have a pretty good shot at providing a cure.
For someone like me, though, I have to make a funny decision. Funny in that if you play by the numbers, it’s a no brainer. But if you play by the additional risks and side effects, it gets kind of muddled.
The two options:
Stem Cell Transplant
- Highest Chance of a cure (60% 5 year remission rate)
- Shortest Recovery Time (~a month, basically)
- Sterilizing in most cases
- Pre-Transplant chemo literally shuts down your bone marrow – in some cases, if the transplant fails, the bone marrow doesn’t actually ever recover. That’s bad news bears.
- Super high risk of infection during chemo, and during recovery
- Fairly decent risk of Graft vs Host (~15% of cases have some form of GvH) which can range from a skin rash to death.
4 Additional Rounds of Chemo
- Safest option. Basically just have to do what I’ve already done 4 more times.
- Little Swimmers stay safe
- Less effective (40-45% 5 year remission)
- Longer treatment (minimum 4-6 months, plus recovery time)
So thems the breaks. That’s a pretty hefty decision to make, and I’ll be pondering it from now until I pretty much make it. But let’s rewind for a second;
What they’re telling me, is that realistically, there’s a 40% chance, even under the best case scenario, that I will relapse. Those are some pretty god awful odds. That is a really high chance. Like…holy crap.
Now, they don’t talk about mortality rates, but I know that leukemia untreated is generally fatal in a matter of a few years. And I also know that repeated treatments are increasingly less likely to work.
What the hell do you do with that information? For a control freak like me, that’s basically the worst thing I can find out. There isn’t an action or a thing that I can do that increases my chances. I just have to sit back, let the doctors do their thing, and just hope for the best.
That is a kick in the balls, for sure.
But, I mean, what else can I do but stay positive? It’s at least more fun to be positive in a shitty circumstance than it is to get depressed. I’ve been depressed before, and it’s decidedly un-fun. So what’s the point of getting depressed? I’m just not gonna bother. Gotta keep calm and keep going.
I’m in it for the long haul, and I will be in the 60%, not the 40.
Count on it.