Premise: in my blog, my intention has always been to report on my own experience concerning both health issues and life in general, with some funny stuff thrown in here and there. I have always intended to do this in a straightforward and humorous manner…that’s how I am in real life, after all! And if I make a mistake, or base a post on incorrect information that I found on my own or that I received from someone else, I try to set things right as soon as possible. Well, I made a mistake in my April 16 2009 post. I meant to write a “correction” post earlier, but other things (life!) got in the way…then a blog reader reminded me of my duty just this morning. OOPS!
I owe a huge debt of thanks to that same blog reader who wrote me a message back in early May (!) concerning my above-mentioned post, the one about the risk of progression from SMM to MM. After reading it, in fact, he wrote directly to one of the authors of the NEJM study. He then sent me their exchange, which I, without naming names for reasons of privacy, will post about today, with his prior permission, of course. Since numbers, as those of you who know me well, are not at all my forte, sigh, I will simply post the examples that my blog reader and the expert used:
Blog reader: I have a friend who currently has Smoldering Multiple Myeloma and has had that diagnosis for 10 years. She has been advised that according to your graph – “Figure 2. Probability of Progression to Active Multiple Myeloma…” she has a 66% probability of developing MM sometime in the future. Further, that as time passes, since the cumulative probabilities are increasing, if she makes it to 15 years, she will then have a 73% probability of progressing to MM and eventually she will have a virtually 100% chance of progression.
I see the data as retrospective rather than prospective. That is, on average, 66% of people with smoldering MM already have progressed to MM after 10 years. As for those who have not progressed at 10 years (about 34% of the original group), an additional 7% in absolute terms or about 21% in relative terms (21% of 34% = 7%) will progress – thus arriving at the 73% cumulative probability at 15 years.
I realize the 21% is a theoretical and imperfect estimate since it does not take into consideration many factors such as death from unrelated causes etc. However, would you say that the 66% value in your graph refers to the proportion of people who have progressed to MM at 10 years and is not an estimate of the proportion of people who will progress after 10 years?
The expert: You are correct in your assumption that the 66% value refers to the proportion of people who have progressed to MM or AL amyloidosis at 10 years and is not an estimate of the proportion of patients who will progress after 10 years. As a matter of fact, the risk of progression after 10 years is approximately 1% to 2% per year.
Our data indicates that the patient is at greatest risk during the first five years and then the risk decreases. As you pointed out, we are all at risk of succumbing to something as times goes on.
So, the rather dismal statistics in the NEJM study refer only to those who HAVE PROGRESSED from a smoldering state to active myeloma after 10 years. It does not take into consideration those who HAVE NOT PROGRESSED. Indeed, if you have NOT progressed, your risk factor decreases with each passing year, which, by the way, coincides with my original interpretation of the study. In the study author’s own words, As a matter of fact, the risk of progression after 10 years is approximately 1% to 2% per year. Hah.
By the way, another myeloma list member recently left a comment on my April 16 post. Here is her take on the study (my emphasis):
“The overall risk of progression was 10% per year for the first 5 years, approximately 3% per year for the next 5 years, and 1% per year for the last 10 years.” What this means is that in year 1, 10% of the group of smolderers progressed to full MM, same in each of years 2-5. Then, after that, of those who were left in the group, in each of years 6-10, 3% of the group progressed. Next, again out of those who were left, only 1% of them progressed each year thereafter. So basically, the rule is “the longer you have been smoldering, the more successful you will be at staying in the smoldering state”, statistically speaking and in layman’s terms. You don’t accumulate [ ie. add ] the percentages as you go along. For example, if you make it as far as year 6, then your chances of progressing during year 7 are 3%.
Okay, so, having SMM does not mean that some day you will inevitably progress to active myeloma. Some of us will, some of us won’t.
I hope this is reassuring to those of you who, like me, have been in a stable smoldering state for a while (2010 will be my fifth year as a…smolderer). And, once again, I deeply apologize for having waited so long to post about all this…ah, what can I say in my defence? I must be super allergic to numbers…in fact, here it comes…ahhh…ahhh…atchooooo! (etciù! in Italian…)