I would like to address a topic that almost all of us with multiple myeloma have to deal with at one point or another – when to get a stem cell trans­plant.

Many of you reading this have been through this procedure already. It is often prescribed soon after diagnosis for patients with advanced myeloma. Most of these folks didn’t have much choice in the matter; it was something that needed to be done urgently to give them the best chance of survival.

Others – and I am in this second camp – have the gift of choices.

I have clinically defined myeloma with a high M-spike and a high free light chain value. Luckily, I have very few myeloma symptoms and no bone lesions. I was initially treated with a combination of Velcade ^[1] (bor­tez­o­mib), Revlimid ^[2](lena­lido­mide), and dex­a­meth­a­sone ^[3] (Decadron) (VRD) for about 10 months.

The goal of this initial treatment was to get my M-spike and free light chain values down. Once that goal was achieved, I was to take a few months off of treatment and then begin the stem cell transplant process.

A funny thing happened on the way to the transplant … My doctors told me “No, not yet.”

The transplant center decided that my myeloma wasn’t advanced enough to warrant the transplant. Instead, the oncologist recommended that I go back on VRD and try to lower my M-spike further.

At first, I was strangely disappointed because I wasn’t pursuing the strategy I had been dead set on for a year and half. I came around, though, and realized that this was an opportunity for me to further take control of my own treatment.

As a more educated patient now than when I was first diagnosed, I have come to realize that we patients often have choices in this battle.

It is important that we understand these choices and push our health care providers to present us with all of our options.

In my case, I followed the transplant center’s advice and went back on the VRD regimen for about five more months. After that, we got permission from my insurance company (no easy task) and the transplant center to harvest my stem cells while I was still relatively healthy and put them in storage. The idea is that this harvest was easier because I had endured fewer cycles of treatment before trying to collect my stem cells.

This turned out to be accurate, as I was able to collect enough cells for two transplants in just one day of harvest.

That was almost a year ago now, and I have been on maintenance therapy ever since. I am putting off my transplant until it becomes obvious that maintenance is no longer working. I will keep this bullet – the trans­plant – in my gun until I absolutely need to shoot it.

This isn’t the course I thought I would take when I was first diagnosed, but I am happy that I have done it this way.

One of the basic tenets of myeloma treatment with novel agents and stem cell transplants is that these weapons tend to work best the first time they are used. Therefore, you must decide when to use them.

The basic options (I don’t profess to know every option) as I understand them are:

1. Do the transplant – or maybe even two – right away, and combine it with intensive, up-front and post-transplant treatment, as well as some maintenance therapy, to go for the deepest possible response.
2. Start with treatment to stabilize your numbers, have the transplant to deepen the response, and then decide about maintenance therapy afterwards – the most common plan.
3. Start with treatment to stabilize your numbers, go on to maintenance for either a fixed amount of time, or until relapse, and only have the transplant at relapse – the wait-and-see plan.

Of course, each of these treatment plans has their logic, their supporters, and some detractors. I do not be­lieve there is one “best” solution for every patient. Especially with myeloma, each case is different, both in terms of the disease and response to treatment.

In my case, I try hard to gauge what possible side effects each treatment entails, not just the survival statistics. I am always striving for quality of life, not just quantity of life. By holding back on the transplant, I am trying to use as little treatment as possible in order to keep some defenses in reserve. Since I have very few symptoms and my M-spike is under control (but not going away), I have this option.

I hope that by delaying my transplant as long as possible, I will maintain the quality of my life now and in­crease the quantity of my life down the road.

I am scared, however, that this is the “honeymoon” time of my disease and that I am damaging my body with the maintenance therapy. My concern is that this treatment is doing long-term damage for near-term results.

While the stem cell transplant is very invasive (it completely kills the immune system), most people seem to be able to cut down on treatment for at least a while afterwards. However, I’m wondering whether the trans­plant is doing as much long-term damage as the extra treatment that’s been avoided.

As I said before, I am reasonably comfortable that I made the right choice for me. I just wish I could get those voices in my brain to stop asking me if I’m sure!

When is the best time to do a stem cell transplant?

You need to decide for yourself.

Aloha and carpe diem.