There are several analogies that are used to describe our ex­peri­ences liv­ing with multiple myeloma. The most common appear to be a battle, a jour­ney, or chap­ters in a book.

The analogy that currently resonates the most with me is the one of chap­ters in a book.

The titles of each chapter of my multiple myeloma book are pretty obvious: Diag­nosis, Radi­a­tion Treat­ment, Watch and Wait, Induction Ther­apy, and Autol­o­gous Stem Cell Trans­plant. The next chapter of my book will be entitled ‘Maintenance Therapy.’

In this column, I would like to share how I came to the decision to start this new chapter.

In my January column ^[1], I explained that one of my New Year’s resolutions regarding multiple myeloma is to become more educated and knowledgeable about the disease. I applied this New Year’s resolution when deciding whether to start maintenance therapy ^[2] or to go treatment free until the inevitable relapse.

Before I began my study of maintenance therapy, I came up with five questions that I wanted answered by my independent study – and by my doctor – before I made a decision:

• Will maintenance therapy prolong time to relapse?
• Will it prolong life expectancy?
• How will it affect quality of life?
• What is the risk of secondary cancers ^[3]?
• How long will the treatment last?

Taking this approach is quite new for me. In every decision I have made since my myeloma diagnosis, I fol­lowed the path my doctor suggested for me, with very few questions. And why wouldn’t I? Using a sports analogy, my doctor has pitched a perfect game in treating me. It was his persistence and diligence that led to my diagnosis. Through the various chapters described above, everything has worked as planned.

What motivated me to take this new approach is the fact that I have been treatment free for nine months since my autologous stem cell transplant last June. This treatment-free period was supposed to last six months. However, a bout with pneumonia at the end of November, followed by an allergic reaction (in the form of a rash) to the pneumonia medication – which lingered for six weeks – extended the treatment-free period. In any case, my myeloma numbers at each three-month checkup since June have been good. I feel great – better than I have felt in three years.

Naturally, the question that came to my mind as I approached the potential start of maintenance therapy in January was: Why is any treatment necessary if I feel good and my myeloma numbers are good?

Little did I know how difficult the searching and processing of information on maintenance therapy would be for me. This is due to three factors.

The first is my lack of interest in science-related topics – spurred undoubtedly by my poor academic per­for­mance in any science class I ever took.

The second factor is the fact that there is so much information on maintenance to consume and process. For someone not used to reading such material, this is not an easy task.

And last but not least, there is the fact that, as always appears to be the case with multiple myeloma, there is currently no consensus among myeloma experts on so many issues associated with maintenance therapy (if and when to start maintenance, which drugs to use, how long it should be administered).

I struggled through dozens of articles before meeting with my doctor for a three-month checkup earlier this month. After doing this research and meeting with my doctor, I was able to answer the five questions I listed above about this potential new chapter in my life with multiple myeloma.

I will begin maintenance therapy this week.

I have no doubt that maintenance therapy will prolong my time to relapse. Most of the literature I reviewed shows that time to relapse nearly doubles in patients who undergo maintenance therapy compared to those who choose not to.

Less certain is whether maintenance therapy prolongs life expectancy – which, by the way, confuses me. If maintenance treatment prolongs time to relapse, and one has to relapse before dying from the disease, doesn’t it logically follow that maintenance therapy prolongs life expectancy? Perhaps this is far too simplistic an approach, but I’m going to side with those studies that suggest there is a prolonging of life expectancy.

The quality of life question was important to me. Nine months without suffering from neuropathy and other side effects that can occur while on Revlimid ^[4] (lena­lido­mide) and dexa­metha­sone ^[5] (Decadron) have been wonderful. The fact that my Revlimid dose will be reduced from 15 mg to 10 mg, and dexa­metha­sone will not be a part of the treatment, eased the concerns I had about quality of life issues, despite increased risks of low blood cell counts and infections.

I also like my odds as far as the increased risk of a second cancer from Revlimid goes. Studies I looked at – which my doctor confirmed – show that the risk of second cancers lies somewhere between 5 and 7 percent. As an old basketball coach, I think about these odds in terms of a sports analogy. If you put a player on the floor who only shot 7 percent from the field, I wouldn’t guard him and would turn my attention instead to defending far more dangerous players.

The answer to the question of how long I would be on maintenance therapy was the one I feared most. The reality is that it could very well be for the rest of my life, or “until the risks outweigh the benefits,” as my doctor put it. A sobering thought considering the toxicity of Revlimid.

Finally, my confidence in my doctor and his team at the cancer center weighed heavily in my decision. I spoke previously about his success in treating me, and I would have a hard time disregarding his rec­om­men­da­tion based on that record. The fact that my cancer center is a well respected cancer research center also factored into my decision.

So this new chapter in my book has just begun. Hopefully, it will be a lengthy one, with little of interest to write about, because the topic of the next chapter is likely to be the dreaded but inevitable relapse.

I realize that there seems to be little disagreement in the myeloma world about the heterogeneous nature of the disease. As a result, a one-size-fit-all treatment approach does not work in multiple myeloma, and treatment therefore varies significantly among myeloma patients.

I nevertheless would be interested in hearing how others arrived at their decision about whether or not to undergo maintenance therapy.