JIM (OC): In the spring of 2011, I noticed that I had trouble walking to my classroom, which was on the third floor. I didn’t take the elevator, I always liked to walk.

My breathing wasn’t right. I was puffing and puffing by the second floor. And I swim for exercise, and I noticed I could not swim as well because I couldn’t breathe as well.

DR. MIKHAEL: So, when multiple myeloma is suspected, there are really three classes of important tests that are done.

They get a blood count, they get chemistry, and then they get very specific protein tests. After the blood tests, we almost always have to do x-rays as well. The patients may also have an MRI or a PET scan to look more carefully at their bone network.¹

JIM (OC): When I was told I was diagnosed with multiple myeloma it was a kick in the face, umm, because it was a shock.

At the doctor’s desk, umm, he slid them across the desk and said, “Here’s for you to read. You’re in stage 3.” And I said, “Is there a stage 4?” And he said, “No.”

And that’s where we began, and my next question was, “What is the next option for me?” From there we started talking about right away having a stem cell transplant.

DR. MIKHAEL: When patients are diagnosed with myeloma, we really want to know as much as we can about their disease. The cytogenetic markers are some of the most important elements of understanding how severe someone’s myeloma is.¹

So unfortunately, in Jim’s case, the markers were not yet available, or weren’t available to be done, but had we known that, it might influence, one, his prognosis, and what stage he’s at in our new staging system.¹

Two, it sometimes influences which treatments we give right up front, and, thirdly, it’ll often influence how long we treat someone or how aggressive we are at getting that disease down.¹

So, in addition to the 17p deletion, sometimes chromosomes can be lumped together that are not normally lumped together, and the two most common in high-risk myeloma are what’s called the translocation 4;14 or t(4;14), or the translocation 14;16, or t(14;16).¹

The third way we define high-risk disease is either by the way the patient presents, by the cytogenetic abnormalities, or thirdly by two biochemical tests we can do—just chemistry tests from the blood. One is called the LDH, and one is called the beta-2 microglobulin. And if either of those are over a certain level, we consider a patient to have high-risk myeloma.¹

JIM (OC): It’s changed what I’m thinking and what I’m doing almost all the time.

It’s hard to say if at the beginning, I was in stage 1 or 2, I think I would have taken it easier mentally, and I think the family would have been a little bit easier with it figuring there’s at least another stage to get through.

DR. MIKHAEL: When we look at myeloma as a whole, we do think it’s important to differentiate high-risk from standard-risk disease.¹

Somewhere around 15% of patients will have those key high-risk cytogenetic features that might even be broadened to 25 or 30% if we capture all of the elements of what we define as high risk.¹

JIM (OC): Well, I think in many cases I’ve seen that it reoccurs, so I’m prepared for that.

DR. MIKHAEL: You know, the treatment plan for any patient has to be individualized.² As I like to say, I don’t treat myeloma, I treat people. So, Jim has to be looked at in his whole context.

Right now, patients with standard-risk myeloma, we tell them the average survival is over 7, 8, and actually probably over 10 years now, with all the new drugs that we have.¹

For the highest-risk myeloma, it’s still a challenge, the average survivals may be around 3 years, but we’re thankful that that even is also improving with the new strategies that we have.^1,3

We know unfortunately that we rarely cure myeloma. But, you know, we haven’t cured diabetes, we haven’t cured high blood pressure, we control those diseases for a long period of time and gaining that control becomes a centerpiece of myeloma care.^1,3

JIM (OC): Now that I’m 5 years past it, the cancer does not control me; I control the cancer.

References:

1. Rajkumar SV. Multiple myeloma: 2016 update on diagnosis, risk-stratification, and management. Am J Hematol. 2016;91(7):719-734.
2. Mikhael J, Ismaila N, Cheung MC, et al. Treatment of multiple myeloma: ASCO and CCO Joint Clinical Practice Guideline. J Clin Oncol. 2019;37(14):1228-1263.
3. Cook G, Williams C, Brown JM, et al. High-dose chemotherapy plus autologous stem-cell transplantation as consolidation therapy in patients with relapsed multiple myeloma after previous autologous stem-cell transplantation (NCRI Myeloma X Relapse [Intensive trial]): a randomised, open-label, phase 3 trial. Lancet Oncol. 2014;15(8):874-885.

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