It was quite a surprise last month to see multiple myeloma mentioned on the front page of the New York Times. It was even “above the fold,” making it big news. Multiple myeloma usually only gets referred to in the paper in obit­u­aries, and then only rarely.

This mention of myeloma occurred in an article on the approval by the United States Food and Drug Administration (FDA) of an immunotherapy treatment to fight a form of leukemia. It was described as “the first-ever treatment that genetically alters a patient’s own cells to fight cancer,” and the article went on to say that work is underway on similar immunotherapies for other dis­eases, including multiple myeloma.

The field of immunotherapy is extremely exciting, holding out the prospect of a whole new class of cancer treatment options. In this way, it is similar to the arrival of chemo­ther­apy and radio­ther­apy to supplement the surgical methods that were initially the only techniques available for dealing with cancer. As described in the excellent book The Emperor of all Maladies: A Biography of Cancer by Siddhartha Mukherjee, these new classes of treatment options revolutionized the options available for the cancer patient. In similar fashion, the new immuno­therapies promise at minimum new treatment options, and at maximum perhaps even a cure, for various cancers.

In my layman’s understanding, the basis of new forms of immuno­therapy like the one recently approved by the FDA is as follows. Mutations to cells are thought to occur relatively often, but usually do not have dire repercussions, as they are recognized as dangerous by the immune system and attacked. In certain cases, though, this recognition does not occur; the immune system does not attack the mutated cells, allowing them to multiply unmolested and thus lead to the patient developing cancer. (As an aside, here is a small math­e­mat­i­cal riddle: What multiplies by dividing? A cell.) The new forms of immuno­therapy augment, or retrain, the immune system to recognize these cancer cells as a threat, so that the dis­ease can be brought under control.

It seems very likely that access to the tremendous benefits of the newest immuno­therapies will one day be widespread for multiple myeloma patients. However, for now, this is still only possible by entering into a clinical trial. A difficulty with this is that there is always the question of whether you will prove eligible to participate in the trial. Each trial has a set of hard-and-fast eligibility criteria; if you do not satisfy all of these, you cannot take part, which can be very frustrating for the patient. It can definitely feel like you are trying to thread a very small needle with quite a thick thread.

For instance, several years ago I came within a whisker of qualifying for a small immuno­therapy trial that had tight eligibility conditions. Basically, trial participants needed to have pre-trial test results that showed enough evidence of multiple myeloma that it would be possible to measure a reduction during the trial. Without these results, there would not be objective evidence that the experimental treatment was actually working. On the other hand, if their pre-trial results showed too much evidence of myeloma, that was not acceptable either; the prototype treatment that was being tested might be overwhelmed by the dis­ease.

For several years, my blood test results did not show enough evidence of multiple myeloma for me to qualify for this trial. Then, “luckily,” my IgA and light chain levels slowly crept up to the point that I did finally qualify in that regard. However, my myeloma cells evidently did not know when to stop. Shortly before embarking on the trial, a final bone marrow biopsy indicated too high a level of myeloma for me to qualify after all.

To say that I was keenly disappointed (a phrase taken from The Right Stuff’s discussion of the grounding of Deke Slayton shortly before his planned Mercury flight), or just plain scared at how things were developing, would be putting it mildly. Fortunately, though, it was at this point that I started taking dexa­metha­sone (Decadron) and Biaxin (clarithro­mycin) in addition to Revlimid (lena­lido­mide). This combination has kept my dis­ease well under control ever since. If that original trial were still running, I believe that I would again show up as “too healthy” to qualify for it.

I hope, though, to be able someday to qualify for a trial with somewhat looser eligibility criteria. It would definitely be a good feeling to help the community of myeloma patients as a “data point” in a clinical trial.

However, to be honest, my main motivation is much more selfish. After taking Revlimid and dex for almost four years, I am grateful for how they are controlling my dis­ease, but I am also heartily tired of the various side effects! If some sort of immuno­therapy could allow me to stop taking them, if only for a while, that would be tremendous. And, of course, if immuno­therapy could one day lead to a cure for myeloma, that would be beyond tremendous.

Having been diagnosed over 11 years ago, the fact that I have multiple myeloma is by now deeply ingrained into my psyche. It would definitely be a major readjustment if I were ever to find myself cured; it’s not something that I let myself think about as a serious possibility. However, if it were to happen, I daresay that I could make the adjustment. I would be tough, but I’m sure I could cope.