I have been off treatment for my multiple myeloma for about six months, so I thought this would be a good time to evaluate where things stand.

First, a short recap for those who have not followed my story.

I was diagnosed with multiple myeloma at the end of June in 2013. Almost immediately, I began what turned out to be six cycles of Velcade ^[1] (bor­tezo­mib), Revlimid ^[2] (lenalidomide), and dexa­metha­sone ^[3] (Decadron). This reg­i­men put me into what appeared to be complete remission. I phrase it that way because in October of 2013 I developed a new M-spike, different from the one that appeared at the time of diagnosis.

I then proceeded to undergo an autologous stem cell transplant at the end of January 2014. I came through the transplant with minimal difficulty and then began what would be two years of maintenance treatment with Revlimid. This took me to March of 2016.

At that point, all bone marrow biopsies and PET/CT scans were clean.

Still, over time, the M-spike had hovered at 0.1 g/dL (1 g/dl) for a number of months. Then it went to the 0.3 to 0.4 g/dL range, and ultimately rose to the 0.8 to 1.2 g/dL range. At last check it was 0.87 g/dL.

Over time, my oncologist and I came to the conclusion that this M-spike is secondary MGUS, also known as “atypical serum immunofixation pattern” (ASIP). This is a little understood and only lightly studied phe­nom­e­non. There is no agreement on what causes it or whether it indeed is a positive prognostic indicator. But for my purposes, what it means to me is that the M-spike is most likely an indicator of a benign condition rather than active myeloma.

The Revlimid maintenance seemed to have little impact on that renegade M-spike, and all other indicators pointed to complete remission.

So the decision was made to stop treatment at the two year mark.

I did not know what to expect once I stopped the maintenance. I thought that I might feel better physically and, perhaps, some of my blood count numbers might improve. My hemoglobin and hematocrit had stayed below normal throughout my treatment up to that point, but not dangerously so.

As the months since March have gone by, the bottom line has been that essentially nothing has changed.

Physically, I feel about the same as when I was on Revlimid. Granted, I no longer have diarrhea issues, which is a common Revlimid side effect, but I was able to control that issue with colestipol (Colestid). Now I no longer need to take that drug.

But other than that, I have noticed no significant differences in how I feel. That might be because I tolerated the Revlimid fairly well. I did not suffer from the overwhelming fatigue that many experience. I have always tried to stay active since my diagnosis and through whatever treatments I was receiving, so my ability to be active now is little different.

Similarly, my blood work results are essentially the same. My neutrophils have recovered, but hemoglobin and hematocrit remain a bit below normal. I asked my oncologist about this, and he said that it is likely that they will not recover further than what they have after six months off of treatment. This is likely the result of damage to my bone marrow caused by a combination of the disease and the treatments. There is no ap­par­ent physical impact from these below-normal results, although it undoubtedly affects my ability to engage in intense physical activity.

So what is the lesson here? I am still struggling with trying to answer that question.

All of us afflicted with multiple myeloma are seeking the same thing: a long drug-free remission. That is our goal since we want to feel good, do everything that we want to do with minimal restrictions, and avoid the toxicities associated with standard myeloma treatments.

Compared to that standard, I am doing very well. So why do I have this nagging sense of concern?

It may be because of that pesky, supposedly benign M-spike. But even my historically pessimistic oncologist said at my last appointment he has no doubt that it is secondary MGUS (although he did knock on wood after he said that).

It may be because I have known so many people who have been declared “cancer free” only to suffer a relapse only a short time later.

Even the most optimistic among us have moments of doubt.

Since my diagnosis, I have tried to project – through my words and actions – a fighting attitude and approach. It seems odd that, now that things appear to be as good as I could hope, I cannot seem to let the ap­pre­hen­sion go.

Here is a recent example.

For quite some time now I have been getting my blood drawn every month and have been visiting the on­col­o­gist every two months. At my last oncologist visit, the doctor suggested that, since I am doing so well, we could go to blood tests every two months and visits at six month intervals.

My shudder at the thought of extending the intervals was apparent to the doctor. He quickly said that it was up to me, and that we could keep the current schedule if that was my desire.

To summarize: The six month report card is good. Being drug free is a blessing, if for no other reason than I have fewer pills to remember to take. Mentally, I am still a work in progress, but I am hoping that as time goes by, if the results continue to be encouraging, I will be able to put aside my uneasiness.

I have talked a pretty good game so far in terms of approaching this fight from a position of strength. Now it is time to walk the walk.