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CLL Watch and Wait Is Over...or Is It?

CLL Watch and Wait Is Over...or Is It?
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Published on May 14, 2020

Peter Titlebaum, EdD, is a college professor at the University of Dayton. He is 60 years old, an avid cyclist and is living with chronic lymphocytic leukemia. Peter first shared his story with Patient Power in March 2020. Here, he provides an update and a glimpse into life on watch and wait.  

“You’re at the zero level, which means we do nothing.”

That’s what my doctor said to me in January 2019, right after diagnosing me with chronic lymphocytic leukemia (CLL). He assured me that CLL is a slow-growing cancer and explained the watch-and-wait approach he thought we should take. 

I still felt great, despite having received a cancer diagnosis, so I continued my healthy and active lifestyle, which includes daily workouts and morning bike rides.

Bone Marrow Biopsy

In early February 2020, after more than a year of watching and waiting, I went to see the oncologist for a routine blood draw. The results this time were anything but routine. My white blood count had doubled. 

The doctor informed me that he wanted to do a bone marrow aspiration and biopsy. This is where they collect and examine the tissue inside your larger bones. Are we having fun yet?

This was not great news to me. My next step, of course, was to learn everything I could about the procedure. When you Google or YouTube, you get to read and watch what is in store for you. This can be scary stuff. However, either I am not overly sensitive to pain (probably true), or all my years of being an athlete helped me endure it.    

On the day of the procedure, they give me a local anesthetic in my back. Thinking about it like getting Novocain for dental work really helped. I relaxed, knowing I could keep my mind occupied for the time of the procedure.

If I can run a marathon or bike 100 miles in a single day, how bad could this be? (Please do not think I am making light of the procedure, I’m just not psyching myself out either.)

Disease Progression

The results of the bone marrow biopsy showed that the CLL had progressed. I am now stage I.  Things got real in a hurry. Does this mean that watch and wait is over? Not exactly.

My oncologist wanted me to get a second opinion from The Ohio State University Wexner Medical Center. However, the doctor wanted me to see is not seeing new patients until August or September of this year.

While I was waiting to see a doctor from Ohio State, I spoke with someone at the University of Cincinnati. Information is power. I choose to be proactive in learning about CLL, as waiting does not seem to be the best advice. Keep in mind, I am kind of a type-A person.

The opinion from the University of Cincinnati was to slow down, no rush. Dr. Emily Curran even sent my test results to a colleague of hers at MD Anderson Cancer Center in Houston, Texas. They also said watch and wait was still the best approach. They wanted to know what Ohio State said after my next blood test came back. 

We waited, but only until April 6, 2020.  I was to see Dr. Kerry Rogers, but I got a call a week before my appointment. They said due to COVID-19, we would be doing the appointment over the Internet. I had my blood drawn locally, so we would have updated results. My white blood count was still at 75,000, which is what it was in early February. 

Dr. Rogers was great online and answered all of my and my wife’s questions. She really took her time with us and made sure we were aware of the next steps. While it would be nice to control things and get started on treatment since I do not have any other symptoms, Dr. Rogers said it makes more sense to continue to watch and wait. 

Looking Ahead

You cannot help but hope you will be part of the 25 to 30 percent that will never need treatment for CLL. That’s still my hope. In the meantime, I feel great, so I will continue to work out one to two hours every day. My weight is stable, I eat healthily, and I have a great family and a loving wife. My goal is to keep taking care of myself and control what I can. “We plan, God laughs.”

We are more informed, and we will take each blood test as it comes. No rush for any treatment. If that ever happens, we will keep you all posted. Life is never dull!

~Peter Titlebaum

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