Back in February, I wrote about a big decision ^[1] that I would be facing in a couple of months – whether to go off treatment for the first time since my multiple myeloma diagnosis in June of 2013. It is now two months later, and it is decision time.

I have decided to “take the plunge” into the world of a drug holiday.

“Taking the plunge” may seem like an odd way to phrase it, since this should be a time for relief mixed with joy rather than a jump into the unknown. But with me, nothing about this disease has been clear or straightforward.

Usually treatment is stopped when the patient is clearly in remission. In my case, the best that we can say is that I may be in complete remission – or not.

To review, I was diagnosed with IgG lambda multiple myeloma and started down the road of Velcade (bor­tezo­mib), Revlimid (lenalidomide), and dexamethasone (VRD) induction therapy in July of 2013.

My M-spike came down rapidly, and in October the tests showed two M-spikes: 0.2 g/dL IgG kappa, and 0.1 g/dL IgG lambda. From that point on, the only M-spike that I had was IgG kappa. It was low prior to and after my stem cell transplant in January of 2014. But since that time, it has stair stepped up from the 0.1 g/dL through June of 2104 to the 0.3 to 0.4 g/dL level for about a year, and since then has hovered in the 1.0 to 1.2 g/dL region.

All during this time, there has been no evidence of relapse. No calcium, renal, or bone lesion activity, and my hemoglobin levels have been fine. So we have assumed that the M-spike is secondary monoclonal gam­mop­athy of undetermined significance (secondary MGUS).

Hence, when I was approaching the two-year anniversary of Revlimid maintenance, my oncologist suggested that, assuming all remained the same, it would make sense to stop treatment “and see what happens.”

Not completely reassuring, but a seemingly sensible path to follow.

The blood test results immediately prior to the visit with my doctor two weeks ago were similar to what they had been, so I went into the appointment with the decision made to stop treatment.

My doctor came in to the room and pulled up my test results. He furrowed his brow at the increase in my IgG levels. Admittedly, the level was slightly above the top of the normal range, but not alarmingly so, and not above what it had been at various other times during the past year. He turned to me and said,“Well, we can just continue the Revlimid at the current dosage.”

This caught me completely by surprise. I replied, “Are you waffling on me?!” I reminded him that we had agreed to stop treatment if the relevant numbers remained the same. He responded, “I am 99 percent sure that you have secondary MGUS, but …” He left the thought unfinished.

This exchange did not help my frame of mind. I wrote off his ambivalence as just a doctor being overly cau­tious, perhaps protecting himself against responsibility for a bad result. I don’t mean to sound harsh, but being an attorney, I recognize that doctors have been influenced by the risk of malpractice litigation – especially when their patient is a lawyer. I don’t begrudge this approach, and really my doctor is wonderful guy. I just take it into consideration when deciding what to do.

This whole secondary MGUS thing is baffling. There are many studies discussing the phenomenon, but no consensus on why it occurs. It seems to have positive prognostic value – or at least does not represent a relapse – but no one knows why that is. The studies are not detailed enough to reveal whether it is common or rare for the benign M-spike to increase as mine has over the period of two and a half years. And my level is relatively high for secondary MGUS, although apparently not unprecedented.

While secondary MGUS may indeed be a good thing, I would just as soon settle for a boring old zero in the M-spike column.

With all of this as background, my thought process goes something like this:

1. I may be in complete remission.
2. If I am in complete remission, it seems to be silly, unnecessary, and potentially harmful to continue treatment with powerful drugs.
3. I have no symptoms that appear to require intervention at this time.
4. If the M-spike that I see in my results is not secondary MGUS, then the disease will declare itself soon enough.
5. If the multiple myeloma starts to progress, it is unlikely to proceed quickly, leaving ample time to restart treatment to knock it back down.

So taking all of this into consideration, I have decided to take the plunge and stop taking Revlimid.

This should be a time to rejoice. After all, who wouldn’t want to be relieved of the inconveniences and side effects of treatment?

But there is this nagging doubt despite the logic behind stopping.

Cliff diving is a popular adventure sport, especially in vacation destinations – maybe the most well-known being Acapulco. It is exhilarating, at least in part because no matter what precautions you take, there is always the element of the unknown. Maybe there is rock down there that no one has seen before, or the waves might not behave properly, leaving too little water in which to land. This element of risk is what makes the dive so popular among thrill seekers.

When it comes to treating a serious disease like multiple myeloma, thrill seeking is not the objective. But I find myself, nevertheless, deciding to take the plunge off the cliff into the non-treatment pool – not for thrills, but for the prospect that my life will be better being treatment-free.

I will gladly settle for a thrill-free float down the river of remission.