When we multiple myeloma sufferers were first diagnosed, we all heard from our doctor something like this: “You have multiple myeloma, a type of blood cancer that is incurable but treatable.”

And so the waiting and fretting began.

No matter what type of frontline treatment we chose, the questions that we had were all the same.

Will it work?

How long will it take to see results?

Can I achieve a partial, or a very good partial, or even a complete remission?

These questions began to be answered by the results of periodic blood tests, bone marrow biopsies, and scans of various sorts.

But we did not receive that information instantly. We had to wait for the results to trickle in, figuratively holding our breath until we knew how we were doing.

Some of us get our results at visits with our doctor, which may occur days or even weeks after the tests or scans. I am fortunate that the cancer center where I am treated has an online patient portal where results are posted soon after the tests or scans.

So I can have the results as soon as they are available. Yet this just means that I am holding my breath for shorter periods of time. The blood test results are not all available at once. First the blood counts, blood chemistry, and nutrition results are posted. Then others – like liver enzymes – show up. Next, the immu­no­glob­u­lin numbers (IgG, IgM and IgA) are available. They are followed by the serum free light chain numbers. And, coming in last but certainly not least, are the serum and urine immuno­fix­a­tion and electro­phoresis results, including the ever-important serum M-spike.

Over the three and a half years since my diagnosis, I have experienced much breath holding waiting for the latest reports to be posted. It is not an easy thing to go through. Tom Petty must have had us in mind when he wrote that famous lyric, “The waiting is the hardest part.”

As I have gone through the cycles of induction treatment, then a stem cell transplant, and finally two years of maintenance therapy, I have learned to deal with the waiting and wondering.

I was been fortunate that my first line of treatment – Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone – was very effective in bringing my numbers down quickly. Still, I waited impatiently for each successive set of results.

Next was an autologous stem cell transplant, a scary prospect under the best of circumstances. Immediately following the transplant, blood was drawn daily for a period of several weeks, and each time it was nerve wracking waiting to see how I was recovering and whether the transplant would be a “success.” Similarly, the post-transplant bone marrow biopsy was an important hurdle, and waiting for those results was taxing.

But luckily the results were good for me. Although I continued to show an M-spike, as I have mentioned in earlier columns ^[1], the M-spike was different than the one present at my initial diagnosis and through the early months of my treatment. So the persistent M-spike was considered to be secondary MGUS, a phenomenon not well-understood but apparently benign.

Through my time on maintenance, the blood test numbers, PET/CT scan results, bone marrow biopsies, and bone scans all pointed to a complete remission. I didn’t exactly relax, but I wasn’t holding my breath nearly as much as I had during the early months following my initial diagnosis.

In fact, sometimes I actually forgot to check my results for a few days after a blood draw. Then something would jog my memory and I would say to myself, “Geez, you better go online and see the numbers!”

So I was merrily cruising through life, numbers good, some even improving. Then last month I went for my regular vein tapping.

The results came in slowly. First, the CBC numbers were posted and they were very good. Better than they had been in forever. Then came the other early returns, all in range and as good as they had been. The IgG, IgM and IgA results were all excellent. Free light chain levels came next and they were perfect.

Then it happened. The M-spike was 1.4 g/dl! This after the previous month’s reading of 0.7 g/dl. In the space of one month, it had doubled.

Granted, it was still presumably the secondary MGUS M-spike. Nevertheless, this was at first alarming. I quickly remembered, however, what I had told other myeloma patients who suddenly got seemingly bad results: view it in its proper context.

This M-spike result seemed to be at odds with all the others. My hemoglobin, calcium, and creatinine levels were all normal. My IgG number, which one would expect to rise in concert with a sudden increase in M-spike, was little changed from the prior month and the recent past. All scans and biopsies had been clear. I had no bone pain.

All of this led me to conclude that this result could well be an outlier, not indicative of relapse. But I was concerned. Concerned enough to call my doctor to discuss it with him. His reaction was consistent with my conclusions. This latest M-spike result may well be an aberration.

So we agreed to do nothing immediately. The plan is to see what the next set of results shows. If at that time we still have concerns, the next step would be a bone marrow biopsy and, perhaps, a PET/CT scan.

This seems to be the prudent course to follow given my history.

I am an analytical guy, even when it comes to my own life and health, but I do worry.

Sometimes now in the late afternoon when I lean back in my “napping chair” and close my eyes, I find myself thinking “Breathe, breathe, the answers will come soon enough.”