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.
This sounds like a very hard decision. Which one are you leaning towards? I’d help you weigh the options but im still fat so my weight would be all in one direction :p.
On a serious note though, there’s always a way that I help people decide on things and it seems to work most of the time. When you have a quarter nearby, let me know.
While the quarter is in the air, which one do you want it to be?
Well, I know I don’t want to have stem cell. It’s a scary procedure, and I would have liked to be able to conceive children normally.
But if that’s what gives me my best chance at a long term remission, then that’s what I’m going to do. What I want doesn’t really factor into it.
If it was a different method, then my bad, haha.
I know it’s not the same thing, not even close to the same. But I am familiar with odds. Odds were Ryan would not go to a regular school. He is in one now and I fought to get him there. Know what? He’s at the top of his class, thank you very much. The odds tell me that there’s an 80% chance he will never be independant, despite his smarts. I’ve had to make hard decisions very early on in his life, the “right” therapy, “right” school”, right “diet” etc. Each one weighed on my shoulders. The statistic in the back of my mind coupled with the knowledge that I have until age 7 to teach him as much as I can before it becomes even harder for him to change and learn many of the skills he was lacking. I have to focus on the 20%. He will be in the 20%. I know he will. I feel it, I believe it and every time someone tells me he can’t do something the two of us work harder to prove them wrong. And you know what? We do.
You will be in the 60%. You are young. You are strong. And most importantly, you have the best fucking attitude I have ever seen. You are a fighter. That counts for a lot. It’s amazing how your body [and mind] respond to the strength of ones own will and determination. Your goal is complete, permanent remission. It is a big decision you have to make and I know it is scary. But, in the end you will choose the option that is right for you and achieving a CURE will be the end result. There is no other option. That 40%? It DOES NOT EXIST in your world. Understand? You let me know if you need a reminder. Oh and your family? We are a crazy bunch of determined lunatics that will move heaven and earth to do whatever we can to help you be one of the 60%. Got it? Good!
xx oo xx oo
[…] One of the posts that I keep stickied up at the top of the page (I’ll probably swap it out with this one, though), is the post that talks about my initial reaction to the first diagnosis. It’s pretty raw, though I’m proud of the writing. It’s here. You can also find more reactions and dealing with the implications here and here. […]