It is familiar cliché. “If you are going to talk the talk, you have to walk the walk.”

I am not sure of the origin of this phrase, but you see it most often in the context of athletics. Athletes who brag about their skills, the phrase argues, must live up to their boasts.

I had a different topic planned for this month’s column, but recent events caused me to change course and consider the importance of walking the walk.

Since being diagnosed with multiple myeloma, it has been my ex­per­i­ence that newly diagnosed patients roughly fall into two categories. There are the “deniers” – those who do their best to ignore the reality of the disease. And there are the “fighters” – those who confront myeloma head-on and assure their loved ones that they will beat the disease no matter what happens.

I am in the fighter category. After being diagnosed, I boasted to all who would listen that I would fight the disease with every fiber of my being. Some of this comes from my natural approach to any challenge. But, by being vocal about my intention to fight hard, I also thought I could help myself maintain a positive attitude while also reassuring my loved ones that everything would be okay.
Walking the walk was pretty easy at first.

Since early in my induction treatment, my M-spike held steady at 0.1 g/dL (1 g/L). This continued through a transplant and for five months post-transplant. Every month as I was awaiting my results, I found myself rooting for the seemingly elusive 0.0 reading. That result would put me in stringent complete remission.

So it was surprising, and a little unnerving, when the results for this past July were posted and my M-spike was 0.3 g/dL. My nurse coordinator urged me not to panic, and I tried to convince myself that this was clearly an aberration. After all, the number was not very high in an absolute sense, and we all know these numbers can bounce around.

But when the next month’s results showed an M-spike of 0.4 g/dL, walking the walk became more chal­leng­ing. In the months since my diagnosis and all during the steady stream of positive test results, I had con­tinued to caution family and friends that there would be challenges ahead. Myeloma does not go away, and no matter how good a person’s response to treatment, it is virtually certain that there will be a relapse and the need to consider additional treatments.

I did not foresee, however, what seemed to be a rather quick relapse following a transplant. Still, if I was going to walk the walk, I needed to, and did, continue to vow that we would fight on and not give in to dis­couragement.

For me, a large part of the fight has been to continually research all aspects of the science of myeloma and what treatments might be best in my particular case. My doctor is an experienced myeloma expert, but he has many patients and I only have one.

As I searched for possible explanations for my rising M-spike, I saw studies about a phenomenon called secondary monoclonal gammopathy of undetermined significance (MGUS). In simple terms, this is an M-spike that arises following treatment, either with novel drugs alone or novel drugs followed by a transplant, and that is the result of a different clone than the one present at initial diagnosis. Several studies have shown that secondary MGUS is actually a good prognostic indicator rather than a sign of relapse.

In order to tell whether you are experiencing relapse or secondary MGUS, you need to consult your immuno­fix­a­tion reports to determine what type of myeloma clones you have had. Unfortunately, when I received the news about my 0.4 g/dL M-spike, I did not have access to my immunofixation reports, and would have to wait for my next appointment.

When I first saw my doctor at that appointment, he expressed concern over the rising M-spike. I then asked whether it could be secondary MGUS. We read through the immunofixation reports and found an interesting pattern.

At initial diagnosis, my myeloma was IgG lambda and remained IgG lambda for about three months. Then, immunofixation showed both IgG lambda and IgG kappa clones. A month after that – and continuing through the remainder of induction therapy, my transplant, and the post-transplant period – the M-spike was IgG kappa alone. In other words, a clone different from the M-spike at initial diagnosis.

So what did this all mean?

According to my doctor, this could be either very good or very bad.

If all of this was secondary MGUS, then the news was very good. It would be a sign of a strong, healthy response to treatment – a reconstitution of the immune system following destruction of the myeloma cells.

On the other hand, if there had been a low level of IgG kappa present at diagnosis which had eluded de­tec­tion, then I might have had a “biclonal” myeloma from the start, and these latest results would evidence that the kappa clone was taking over. This would be bad news, since then the disease would be pro­gress­ing just a short time after the transplant.

Out of an abundance of caution, we decided to intensify my maintenance therapy by increasing the dose of Revlimid from 10 mg to 15 mg and by adding prednisone to the mix.

The doctor also said that he would consult with the hospital pathologist, who is particularly expert in mye­loma testing, and let me know what he thought. For me, this meant more uncertainty, which is not unusual for a myeloma patient. Still, in my mind, I had a new fighting chance and reason to continue to express op­ti­mism.

The pathologist said that it was unlikely that I had biclonal disease, but he could not completely rule it out. My next blood test showed a reduction in my M-spike to 0.3 g/dL. My doctor viewed this as further support for the conclusion that what I was experiencing was secondary MGUS rather than the beginning of relapse.

So what does this all mean?

First, it means that I, like all of us, am dealing with probabilities not certainties – something that is more common than we might prefer with this confounding disease.

It also means, however, that there is more to walking the walk than simply putting on a brave face and assuring our loved ones that we will get through this.

Fighting, when it comes to dealing with myeloma, also requires that we take an active part in the plan to combat the disease. Our doctors and the other medical professionals who help us can only do so much. It is up to us to do the research specific to our individual circumstances and advocate strongly on our own behalf.