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Living with CLL: The First 32 Years

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Published on September 11, 2020

A Patient Shares Their Story of Living With CLL for 32 Years

Ed Spuzello was diagnosed with chronic lymphocytic leukemia in 1988. His story includes several drug therapies, a clinical trial, a stem cell transplant and a thirty-two-year long journey in and out of remission. Last month, Ed finished a two-year treatment cycle on venetoclax (Venclexta) and is now lives drug-free. Watch the full story.

This program is sponsored by AbbVie, Inc., Genentech, Inc., and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.


Transcript | Living with CLL: The First 32 Years

Edward Spuzello:
Hello. My name is Ed Spuzello and this is my CLL story. When I was first diagnosed in 1988 the doctor told me that I was going to take a 10-month treatment of chemotherapy. And that was about all I knew. I didn't know whether I was going to be cured but at the time I was busy, I had a new business that I had started, I had kids and a wife. I had to do it, I had to keep working and I had to take the treatment. And I lost my hair and I was sick, but I got through it and I was put into remission.

I remained in a remission of sorts for about 18 years until 2006. And at that time, I received rituximab (Rituxan) immunotherapy treatment for three months and it put me into a pretty good treatment, and that lasted for about three years.

In 2009, my Rituxan treatments weren't working for me so I was referred to the Mayo Clinic. And at the Mayo Clinic, they did blood work and a bone marrow biopsy and decided that they needed to do some treatment right away and they found a clinical trial. I did that for three months and when I was done, I was in remission.

In the spring of 2018, I had a relapse. I was hospitalized for two or three weeks until I got on a drug called venetoclax (Venclexta). An oral drug which is great because you don't have to get the drug intravenously. And I was on Venclexta for two years. I had no side effects. Some people I understand have some side effects but generally, they are mild.

Now I'm drug-free. It doesn't mean that I'm cancer-free. They can't find any but there's probably some around someplace. And for you people that are newly diagnosed, my story is one that every time I needed something there was always something available.

Today there are so many drugs that are available. Venclexta like I took it's a frontline drug now, you take it right away. You take a two-year treatment and you may be done forever. Ibrutinib (Imbruvica) is a similar kind of thing and combination drugs are available. The disease now is really not life-threatening and the treatments are without problems and they're oral and don't worry about it.

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