… I have my five year anniversary of diagnosis. This is quite a big deal for me and I set a timer on my page to count down to it. Having used a 2006 study to work out my prognosis, rather excitingly titled: Splenic Marginal Zone Lymphoma: a prognostic model for clinical use: my survival rate at five years was measured at 75% unless I slipped into high risk, in which case it was a 50/50.
Luckily I haven’t got high risk (as far as I am aware) so fingers crossed it doesn’t get worse (although my red blood cell count would count to a higher mortality in univariate anaylsis).
The ten year survival rate (just over five to go) was just above 50%, but with a median age of 64 years old in the trial, I had youth on my side.
It’s noted in both this study and the 2015 I refer to (outcomes in Splenic Marginal.zone lymphoma) that there is a 15% chance in the first 12 years that the cancer will become faster growing and this relates to a much higher mortality rate. The 2015 study also says;
With a median follow‐up of 8·3 years (range: 2·3–24·8 years) for living patients, the 5‐ and 10‐year OS for the entire cohort was 64% and 50%, respectively. The 5‐ and 10‐year FFS after first‐line treatment (for the 90 patients who received treatment) was 47% and 29%, respectively.
This is a much lower survival rate for five years, but about the same for ten
Anyway when the timer clocks down in under two months I will view it as beating a 1 in 3 or 4 chance of dying.
Either way, and having bored you with studies, it’s pretty good to beat 25 or 36% death rate after five years. It’s anniversaries and tests that really make you think about these things (as well as other people getting cancer). I hope the dropping red cells aren’t a reflection of a faster cancer developing, but even if it doesn’t I am very pleased that my initial concerns of not making a year (I even had conversations to this effect and how to tie everything up) were unfounded.
To celebrate this I want to do something for a cancer charity, but this is where I have gotten a little stymied. I can’t run now, and my fitness isn’t what it was. I haven’t written a book since i had the kids (lazy I know) and I’m lousy at baking. So I wondered if anyone had good ideas for something epic enough to raise money (like marathon running) but without the spleen breaking impact. I raised 2k when I did the Paris marathon, but a 5k doesn’t really have that much impact.
Anyway, let me know. I am very pleased I’ve nearly beaten the five year rap and would be keen to do something to celebrate. So ideas welcome, and thanks for putting up with me for those years, you’ve got at least another 66%* chance you’ll have to put up with me for another five…. ;).
*(Those of you who are pedantic will note that as the 25% in the first five years are the worst effected this may not be as simple as 75%/3*2 based around a 50% survival, leading to a 2 in 3 chance of survival. To you I say yahboosucks :))
spleniclymphoma 
Statistics can sometimes be depressing. To some because they are confusing but to others because they sometimes appear worse than they actually are.
You mention FFS but I’m not sure if some of the stats you’re referring to are overall survival statistics. Those can be misleading for folks on the younger side of of the survey median. Most SMZL cases happen to people 63 and older some of whom are likely to die of another cause or who may have been too weak for treatment or too weak to survive treatment. Their death would count in an OSS statistic. So one has to assume that some of the deaths were not caused by SMZL. A younger person could also imagine that their survival and remission would be at the very least shorter and optimistically much longer.
Also Stephen J Gould’s “The Median is the Message” suggests we should imagine what happens to the ones who survive. Studies stop at 5 year marks or when half the cohort dies. In both cases Gould speculates that the ones who survive might all live normal length lives. In fact since they aren’t tracked, they could all live to 100.
For FFS the surveys track remission which in the case of SMZL isn’t usually fatal.
I’m 52 years old, 8 years into remission (I had to double check). I presented with splenomegaly and received 6 cycles of CVP-R and two years of rituximab at three month intervals. So far so good.
Hi John, thank you for this. It’s really kind of you, and quite helpful to out it in perspective. A few years ago one of my friends Aaron, gave me an article on left arm bias, which is very similar. So I need to concentrate on that. I’m glad to hear you are doing well. Reassuring to hear how it can go :).
Publish the blog??
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