CLL Patient Story: Living With Watch & Wait, Preparing for Treatment

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Meet chronic lymphocytic leukemia (CLL) patient Maggie Buckenmayer as she shares her story receiving an unexpected cancer diagnosis and how she’s preparing mentally and emotionally for treatment as she continues in the watch-and-wait phase.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support. These organizations have no editorial control, and Patient Power is solely responsible for program content

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:                      

us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayer. Maggie, you are still in the watch and wait phase. When were you diagnosed? 

Maggie Buckenmayer:           

I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.

Andrew Schorr:          

Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it? 

Maggie Buckenmayer:           

Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I've never felt better. I exercise a lot. I eat a healthy diet. 

I'm just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.

Andrew Schorr:          

My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.

Maggie Buckenmayer:           

Yeah, and actually, it was during that trip, and I told my husband, “I'm not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I'm extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.” 

And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I've learned a lot more about the disease. I'm, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I'm on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I've got a really good, positive headset now. But that first month was awfully really bad.

Andrew Schorr:          

What if it gets to the point where your physician here in San Diego says, “You know,a lot has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?

Maggie Buckenmayer:           

I think mentally and emotionally, I'm fairly prepared for that. I've also tried to be as involved as I can in other—Leukemia & Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts. 

And I have such great faith and hope in what’s happening in trials and current treatments, that I know that at some time—my prognostic factors are probably five years, and I'm doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on August 21, 2019