Friends and business associates often tell me I write like I talk. Good! Because that is what I’m going to do here. I’m going to try and explain the best I can—patient to patient and in my own words—what I think every multiple myeloma patient should know.
You are reading my www.multiplemyelomablog.com site now—that’s a good start.
Mayo Clinic has one of the top three visited medical Websites in the world. Mayo also is one of the top diagnostic and treatment centers for multiple myeloma—and features an easy to understand, comprehensive myeloma site.
OK. The basics aren’t that hard. Multiple myeloma is a cancer of the plasma cells in the bone marrow. Left untreated, multiple myeloma is likely to kill you in a few short years.
The good news is there are more new, promising therapies for treating multiple myeloma than any other cancer.
The bad news is there is no cure.
Let’s start with the BIG question every patient asks as soon as they learn they have cancer: “Doctor, how long do I have?”
Most oncologists will try to dodge the question and start mumbling something about how “You aren’t a statistic.” or “That isn’t important. What is important is we start treatment as soon as possible.” But patients and caregivers can be persistent—especially after someone tells them they have incurable cancer!
Cornered, most myeloma specialists are now telling their newly diagnosed patients that they could live seven, eight or even ten years. But you also may hear that the median life expectancy for a multiple myeloma patient is between three and four years—or 44 months to be exact. Both of these statements are correct.
How is it possible for one oncologist or info site to say 8 years while another says 44 months? Here’s where we start building your multiple myeloma IQ.
It is true that—despite all of the new novel therapy agents available to treat our cancer—some patients do die.
But some patients live decades—and there are more and more of those every day.
Like many cancers, multiple myeloma can be staged. But staging isn’t the most important prognostic factor. How well you will respond to treatment—and how long you are likely to live—are more dependent on some very specific genetic information.
One of the first things your oncologist should do is order several myeloma specific blood tests to check if you have something called a chromosome 13 deletion. If you do, it isn’t good. Not hopeless—it just means your type of myeloma is going to be more difficult to treat.
There are a number of other slight genetic abnormalities that these tests are looking for that may also lead to treatment difficulties. Examples of these are another chromosomal deletion, number 17, along with others which are referred to as translocations. These include 4/14, 14/16 and 13/32.
Researchers are identifying more of these genetic abnormalities which may negatively effect how well certain therapy agents work—and for how long. These discoveries also help our docs get a better idea which treatments are more likely to work.
At this point, it isn’t important to know a lot about this. The important thing is to make sure you are tested.
Using genetic testing, myeloma experts can place you in one of three categories: low risk, moderate risk and high risk.
Median life expectancy numbers can be extrapolated (a big word for organized) by category. This explains why one doctor can say 44 months and another 8 years. Thanks to new, novel therapies, low risk patients—those with no chromosomal abnormalities, are living an average of ten years. Moderate risk just under five years. Unfortunately, the median life expectancy of a high risk mutiple myeloma patient is three years or less.
Add them all up and you come up with a median life expectancy number equalling 44 months.
Make sense? I thought it was important to take the time and explain how and why median life expectancy numbers are what they are. Your multiple myeloma IQ just jumped ten points!
Now let’s pick-up the pace. Once you are diagnosed—and your genetic situation is revealed—your oncologist can suggest a treatment plan.
Hopefully you have gotten a second opinion and both parties agree—or you have decided to work with one or the other doctor or institution. Now what?
WHEW! This is longer and more complicated than I planned. But that is how I talk… I get carried away and tend to run over my alloted time.
So as much as I hate to do this, I think I need to finish working on this over the weekend. We will continue building your multiple myeloma IQ on Monday. The next phase will go faster—promise!
Feel good and keep smiling! Pat