So what exactly is next?

That is a question I have been asking myself quite a bit lately. It seems like for the past year or so I have been taking a mental vaca­tion from looking ahead. For an incessant planner like me, this has been a change and, to some degree, a wel­come one.

But now I find myself rolling the question around in my mind. And it arises on mul­tiple levels.

I wonder what is next with my condition. I have been in complete remission for the past year and half, even before my transplant. I am trying to live in the moment and not think about the almost certain relapse. After all, some myeloma patients can go many years, even a decade or more, before relapsing. But it’s difficult to put those thoughts completely aside. When will it come? Will it be a slow march upward in my M-spike, or will it be aggressive?

It seems almost silly to waste a beautiful summer day thinking about it, but I do.

Then there is the maintenance question. What is next when I reach the two-year mark of Revlimid ^[1] (lena­lido­mide) maintenance? When I was first diagnosed, the consensus was that two years of maintenance was suf­ficient for standard-risk patients in remission.

But more recently there have been studies which suggest that continuous therapy is the way to go. It sure would be nice to go drug-free for a while, even though the side effects for me have been minimal.

So what to do? I have about six months before the two years is up, so there is time to consider the options. And as one of the Beacon forums posters noted recently, the decision may be taken out of my hands. In his case, a heart issue resulted in the premature discontinuation of his Revlimid maintenance (see related Beacon forum posting ^[2]).

But perhaps the most troublesome “What’s Next” question has to do with what path to follow if/when I relapse.

There are two parts to this question for me.

The first issue is with whom to consult when deciding what treatment plan to follow.

I currently see a myeloma specialist at a teaching hospital in central Pennsylvania. Until about a year ago or so, my doctor was the only myeloma specialist at that hospital. So there is little diversity of approach and ex­perience at that facility.

Additionally, the hospital where I am being treated, although it is a teaching hospital, participates in very few myeloma clinical trials. I don’t mean for this to appear to be a criticism; with over 700 myeloma patients and such limited staffing, there is little capacity to do more than see the patients.

For that reason, I have thought for some time that, when deciding what approach to take at relapse, I would seek other opinions. Living where I do, I am in easy driving distance to Philadelphia, Baltimore, and New York. Even Boston is in driving distance. There are many respected myeloma specialists in those cities. In some ways, this embarrassment of riches makes the decision more difficult. I suppose that I could visit sev­er­al of them, but given how diverse the opinions are among myeloma doctors these days, I wonder how much that kind tour would advance the ball.

Equally confusing on the “What’s Next” front is what treatment plan to follow.

When I was first diagnosed, the consensus was to follow the Velcade ^[3] (bor­tez­o­mib), Revlimid, and dex­a­meth­a­sone ^[4] (VRD) plan. Plus, I didn’t know much about myeloma then. So it was an easy decision to simply follow the advice of my doctor. But, since that time, many new drugs have been developed.

For a while my thought was simply to re-do the VRD regimen on relapse. After all, it worked extremely well the first time, and some doctors believe that it makes sense to re-try drugs that have worked in the past – particularly when the patient has been off of the treatment regimen for a while. But with all of the new drug options coming online, I wonder if it would make sense to try something new.

Of course, then the question becomes which drug combination to try.

A few months ago, one of the Beacon forum members posted about an article describing emerging ap­proaches to myeloma treatment (see related Beacon forum discussion ^[5]). It was in the form of a panel discussion among myeloma specialists. I found the review to be at once educational and confusing.

There are so many choices and different trials going on that I really don’t know where to start. Given the hetero­geneity of myeloma caused by the many different clones that may be present in any one patient, there just is no way to determine what drugs work best for a given in­di­vidual. We hear quite a bit about indi­vid­u­al­ized medicine, but until there are readily available tests to determine what clones a myeloma patient has and which drugs work best for those clones, we are often shooting in the dark.

Most myeloma doctors recommend two- or three-drug combinations, theorizing that this increases the like­li­hood that one or more of the drugs will be effective. This approach makes sense, but it’s not entirely com­fort­ing that we still are guessing about what will work based upon a statistical model.

Myeloma is not curable, but it is treatable. While the search goes on for a cure, many of us would be satisfied if myeloma achieved the status of a chronic, treatable disease. The analogy is frequently drawn to diabetes, which cannot be cured, but in most cases is kept under control with a well-established regimen of diet, med­i­ca­tion, and exercise. But until we come up with an individualized approach for each myeloma patient, the goal of chronic disease status cannot be achieved.

As I sit here today, I simply don’t know what’s next. I have taken a mental break from thinking about these issues and doing the background research necessary to make informed decisions. I think that it is time re-engage so that I can be prepared when the time comes to take action.