One of the first questions most of us probably ask after being diagnosed with multiple myeloma is "How long do I have?", or some derivative thereof.  For me, I think the question came right after asking what multiple myeloma is, and whether it's curable.

Perhaps it might be better to take a more philosophical approach and respond by asking "How long does anyone have?", reflecting the fact that life is a crap shoot, stuff happens, and we truly don't know when we will die.

After all, barring any knowledge of the unforeseen, most people tend to get on with their lives and don't spend a lot of time pondering how long they have to live.  Conversely, when you've been told you have a terminal disease, the future no longer seems quite so certain and it's not as easy to ignore the question.

For purposes of this column, I'm going to gloss over the more philosophical approach.  I know I could get killed in an accident tomorrow,  or I could have a heart attack on my next bike ride, or lightning might strike me, but those are all relatively random events with low probability and nobody has indicated they are about to happen to me.

I have however been told that I have incurable cancer, and given my nature, I'd like to have a better idea of what the future holds for me.  I'd like to have an idea of how long I have to get things in order, how long I have to fill and empty my bucket list, and how much dreaming I should still do.

As might be expected though, I'm not really going to get an answer to this question, because there is no definitive answer to it.  There are too many factors and too many unknowns governing the prognosis for multiple myeloma, not to mention new treatments being developed that offer better survival.

Having admitted this though, it still hasn't stopped me from trying to discern some kind of answer from the bits and pieces of data I've accumulated since being diagnosed.  So get ready for some twisted logic

The first thing I struggled with is what my basic prognosis might be.  Figuring that out is difficult because I'm in a clinical trial using a combination of Kyprolis ^[1] (carfilzomib), Revlimid ^[2] (lenalidomide), and dexamethasone ^[3] (Decadron), commonly abbreviated as CRD, and there is insufficient data yet to determine the median progression free survival (PFS) or overall survival (OS). 

Since Kyprolis is in the same class of drugs as Velcade ^[4] (bortezomib), and since treatment using Revlimid, Velcade and dexamethasone (RVD) has been around a bit longer, I figured I could assume CRD would have similar results to RVD.  However, data for RVD is also limited and the best I could come up with was a median PFS of 47 months, with median OS not yet determined.

So next I considered just Revlimid and dexamethasone (RD), figuring results for RVD and CRD would be at least as good.  Based on data from ASCO 2012, the median OS is 88 months.

Therefore, lacking any better data, I'll just assume the median OS for CRD is also 88 months, recognizing that results should most likely be better than that.

Since 50 percent of patients fall below the median and 50 percent above, I next considered which half I was more likely in based on factors that contribute to better or worse response, and how much above or below the median I might be.

Based on an Italian study, patients reaching a complete response achieved better OS than those reaching a partial response or a very good partial response.  I've reached a stringent complete response, but so have about 60 percent of the patients on CRD, so I guess I can't assume too much improvement over the median OS for that.  However, I will be optimistic and assume I'm in the half above the median OS.

Based on a French study, the following factors all contribute to poorer prognosis:

• age greater than 55 years
• beta-2 microglobulin levels above 5.5 mg/L
• chromosome 13 and 17 deletions
• translocation from chromosome 4 to 14

The median OS for patients with two or more of these factors was less than the median OS for the entire group, while the median OS for patients with only one of the factors was 1.3 times greater than the median OS for the entire group.  The median OS for patients with none of the factors had not been reached yet.  I have none of these factors, so I should be able to assume at least a 1.3 improvement in OS, and most likely better.

I've also come across a few studies showing anywhere from a 1.4 to 1.7 improvement in OS for patients achieving a sustained molecular level response (also referred to as minimal residual disease).

So, since I have none of the factors listed in the French study, and since I have also achieved minimal residual disease, I expect that my OS should improve by a factor of 1.3 times 1.7, or approximately 2.2, to slightly better than 16 years.

Before everyone starts picking apart my calculations, I'll come clean and admit I threw this data together with no regard for sound mathematics.  I did this purposely to illustrate how easy it is to get carried away and take data out of context, or use data in an invalid way, and produce garbage.

In my case, I truly believe the odds are in my favor to have better than average survival, but there's no way to determine how many months or years that may be.  Furthermore, given the uncertainties and variety of factors involved, is it worth expending the time dwelling on it?

After almost two years with this disease, I'm gradually realizing that the philosophical approach is perhaps a better way to deal with it.  There's no doubt I'll still think about my future, but instead of asking "How long do I have?", maybe it's better to ask "What can I do to get the most out of today?".

Peace, and live for a cure.