My CLL clinical trial: The end of the beginning

Eight weeks. That's how long my wife and I have been in Houston, where I entered a Phase 1 drug trial for ABT-199, a new experimental drug that may provide at least a long-term solution, if not a cure, for my chronic lymphocytic leukemia (CLL).

We came not knowing what would happen or what to expect. We were amateurs, neophytes, newbies, 76-year-old children going to the doctor for the first time, figuratively speaking.

Beginning a Phase 1 clinical trial for CLL treatment
We had read the protocol and knew a bit about what we were facing. We were willing to sign the documents to allow both the drug company and MD Anderson to use this drug on me for my CLL treatment. But what would happen?

Would I have serious adverse reactions to the drug? I was in a high-risk category because of the size of a mass of lymph nodes in my abdomen.

As such, the risk of Tumor Lysis Syndrome (TLS), a metabolic complication that can occur after cancer treatment, was pretty high, but the trial protocol was designed to reduce the risks. We knew I would be hospitalized for every drug dosage increase so that if something happened, I would be ready for immediate treatment.

We knew a lot. We knew nothing. We were excited. We were leery.

Living in a hotel room
Going home was not an economical option, so my wife Melanie and I stayed in a hotel suite. This is the longest we have ever been away from home.

We've spent almost every night in a 20x30-foot room, with the exception of the four two-night stays in the hospital.

After 47 years of marriage, you would think we would know each other well. We do, but we still learned more about each other. We don't fight. I could probably count on two hands or less the number of true fights we have had, but we did get on each other's nerves, mostly since we realize we will be home in a few days.

Preparing to go home after CLL treatment
The tight weeks are coming to an end. We are no longer amateurs. We know where to go.

We have encouraged others who walk in the doors of MD Anderson with the doe-in-the-headlights look in their eyes. We have visited with them, encouraged them, prayed for them. We are the welcome wagon, the greeters, the encouragers, the guides, the helpers. We are experienced.

I have one more visit with my clinic doctors this week, and then it's back home for a month. We will continue to come to MD Anderson each month for a while for labs, drug refills and doctor's visits, but that is in the next step to a total healing.

I must remind myself that this is not the end, but the end of the beginning. We still have much to consider. While I'm looking forward to seeing family and friends, sleeping in my own bed and seeing our dogs, there are some things I'm nervous about.

I'm concerned about the unknown. How long will this drug work? We entered the trial expecting to move on to a stem cell transplant. Now we have to consider whether this drug is a long-term solution and put off the transplant, or to continue to move in that direction.

In either case, we have just begun a new era in my life, a new phase in life. And I'm excited to let life begin again.

Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.