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CLL Since 1988: A Patient’s Resilience After Relapse

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Published on February 6, 2020

Key Takeaways

  • Living a normal life is possible after a CLL diagnosis.
  • How to cope with a diagnosis and long-term treatment is different for each person.

Edward Spuzello, living with chronic lymphocytic leukemia, shares his 32-year journey with multiple treatments including chemotherapy, a stem cell transplant and most recently venetoclax. Watch to hear his story and how he has remained resilient over the years.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.


Transcript | CLL Since 1988: A Patient’s Resilience After Relapse

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.

Michele Nadeem-Baker:                       

You have been treated a few different times in a few different ways for your CLL, one that resulted in 17 years of remission. So, if you can put yourself back to that point in time, did you think your CLL was gone? How did you feel when you heard it had relapsed again? How did you feel emotionally? 

Edward Spuzello:                        

Well, I never felt like it was gone. When I initially took chemotherapy, my oncologist at that time said, “Well, hopefully, this is going to put you in some sort of a remission,” which it did. “After that, we’ll just have to watch and see.” I had checkups every three or four months for years, and before I had to have any more treatment, he kept warning me that my CLL was waning and waxing, as he termed it. Sometimes, it was better—my immune system was kicking in. Sometimes, it was worse. So, I was pretty much prepared for it.

So, in 2006—it wasn’t until 2006 that I had my next treatment, after 17 years, and that was rituximab (Rituxan). I had three months’ Rituxan treatment, and it did me quite a bit of good, but three years later, I was right back where I started. I went through the Rituxan treatment again, but it didn’t do a lot of good. It didn’t do a lot at that time. At that time, he referred me up to the Mayo Clinic.

But, during all that time, I guess I’m not the person that we were just talking about these things—when I was first diagnosed, the oncologist said, “Well, we’ll continue this treatment, and you should be okay.” I said, “Fine.” I didn’t worry too much about it. I didn’t ask too many questions. I didn’t know much about it. I had a business then that I had just started two years before. I was married, I had kids, I had to make money, so I just did it, and I didn’t worry too much about my condition.

In recent years, it’s become more active, and in 2009, after my Rituxan treatment had basically failed again, they sent me up to the Mayo Clinic, and I got in a clinical trial up there which did me quite a bit of good, and I was in pretty good remission until 2014. In 2014, they decided to remove my spleen. It was still full of CLL, and it was eating up my platelets; my platelet count was really low, so I did—I removed my spleen and took some other chemotherapy Rituxan treatments with it. 

But, when they removed my spleen and biopsied lymph nodes and stuff around there, they found that some of my SLL was morphing into large B-cell lymphoma, which is much more dangerous. So, at that point, in 2014 and ’15, I had a stem cell transplant, and I spent six weeks at the Mayo Clinic, living there, to do it. So, that was—I worry too much about it, but that was quite an experience. It wasn’t a lot of fun.

Michele Nadeem-Baker:

How did you get through that, Edward? 

Edward Spuzello: 

I got through it okay. Massive amounts of chemotherapy—killing all your white blood cells—but mainly, I was just terribly fatigued. I wasn’t real sick, I was just really fatigued. I slept most of the time. Anyway, I got through that, and I got better, and I was doing fine until June of ’18. Unbeknownst to me, I really had a complete relapse then. I didn’t see it coming, and my lymph nodes didn’t swell up, I didn’t have night sweats, but eventually, I had some bloodwork done, which looked terrible, and so, I had a complete relapse.

I was in the hospital for three weeks, and it took me a long time to recover from that, and I finally got on—in July, I finally got on—into August—venetoclax (Venclexta), which is my only hope. I could have taken ibrutinib (Imbruvica) at that time, but the Mayo Clinic felt I was better off with Venclexta, and Venclexta put me into pretty good remission, by the way, the first month. That’s the way it works. So, I feel fine. I have lots of energy, and I have more fatigue than I did, but as they say, “Well, you’re older now, too. You’re 77 years old.”

But now, I’m feeling pretty good, but I don’t know what the future is. They said I should stay on Venclexta two years. Well, it could work in two, but after two years, they say, “Well, maybe we could switch to ibrutinib, actually.” Also, they want to look at clinical trials, getting me into clinical trials. Things like CAR T-cell therapy  are probably too far out there, and I’m a really high-risk patient right now. I have 17p deletion, I have TP53 gone—I have all these things, so I’m a pretty high-risk patient, so I don’t know what’s going to happen, but right now...

Michele Nadeem-Baker:                       

...Edward, we look at you, and it’s amazing to me—you’re very resilient.

Edward Spuzello:  

II’m pretty good right now. During this whole process, I don’t think it changed my life much at all, and I don’t think my life would be any different than it’s been. I tolerate treatments pretty well, which is in my favor.

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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