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Rich Siegel: My Advice for Moving Forward After a CLL Diagnosis

Published on October 17, 2014

Rich Siegel, 68, was diagnosed with chronic lymphocytic leukemia (CLL) in 1999. At first, Rich took the news hard. But after several months, he found a way to put the disease in the background and move forward with the goal of living life the best he could. Rich shares his advice for people with CLL, including the importance of partnering with a great doctor and staying educated about the disease.

This program was sponsored by The Patient Empowerment Network, which received educational grants from AbbVie, Inc., Genentech and Gilead Sciences, Inc.

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Transcript | Rich Siegel: My Advice for Moving Forward After a CLL Diagnosis

Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff 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.

Rich Siegel:

My name is Rich Siegel. I’m 68 years old, and I was diagnosed in 1999.

I had a high blood count, a high white blood count. And my general doctor referred me to a hematologist who essentially said, you have CLL. And I heard, you know, the phrase it was good cancer to have if you can have any kind of cancer. I didn’t take it very well at first.

And it took me about maybe three months to six months to get to the point in, in my life where I thought, I’ve just got to move on. I’ve got to put the disease in my background, do the treatment that’s necessary but move on with life. Otherwise, I’m just going to be stuck.

I went to see a psychologist that I had seen many, many years ago and went back to see him and, and talked about it, and he helped me through that transitional period.

What helped me move on was talking with the psychologist and working with him. I had met him many years ago, and got back in touch with him, and it, it really helped.

I would say to other people that, you know, you can swirl around with the CLL and think about the future and not do things that, that you would like to do. But to the extent that you can, you really need to move forward, try to keep it in the background, and live as best, live life as best as you can.

I’ve had a couple of remissions. I’ve, I started off with fludarabine (Fludara) and rituximab (Rituxan). That lasted about two years. And I’ve learned, in my mind, I look at the, you know, every time I look at my blood counts, people say these are normal white blood counts, or red blood cell counts. And I don’t look at things as normal anymore.

I look at things as typical and as almost statistically. And I try to look at CLL, or what are the odds for me, not looking at me as part of a crowd. When I got into the first remission, I was very excited. It was great, but then I saw myself slowly coming out of it.

And I realized, by looking at the literature and talking with my hematologist, that these things aren’t going to necessarily last that long, and it will, I will be treated further as new drugs come along. And so I just saw going into remission and coming out of remission as a stage.

The, I took bendamustine (Treanda) and Rituxan, and that gave me a, a longer period of time, almost five years. And recently, I went on a course of [obinutuzumab (Gazyva)], trying to just bring my white blood count down, in hopes that I would be a candidate for some of the new, less invasive and toxic biotherapies that are coming out.

I see it as just a part of my life. And hopefully there will be treatment. And, you know, I can get hit on the street by a bus tomorrow. You know, so why wait?

Why not just live the, the, the way that you can, the way that you want to, at this point? And keep on top of the literature and make sure that you have a good doctor.

What’s my mood about all this stuff? You know, I don’t think about that at all. I’m, I’m married, newly married. I’ve been married for a little bit over a year. I have a 7-year-old at home, who is referred to as uncle by my 7-year-old grandson. And, you know, I just, if I, if I don’t stop living, I will, you know, let this disease get the hold of me.

And, you know, maybe tomorrow, I’m going to get hit by, by the bus and that would be all over. And just think, you know, what would that be? How bad would that be? So, you know, the disease is there. I think we’re all fortunate that there [are] so many new things coming on the horizon, that it’s, that even for me, there are choices out there.

And in the past, you know, it’s, it hasn’t really been a lot of choices, and the drugs have been very toxic in the past.

I would say to someone else couple things. Get a really good doctor if you can, who knows a lot about this disease but a doctor that you can talk to really frankly who’s not going to just, you know, look at his watch or her watch and say, well, I’ve only got another 10 minutes with you, because I’ve got eight other patients to say, see today.

And also, keep in touch with the CLL literature that’s coming out. Join Yahoo! CLL group and keep watching advances that are put out on, on programs like Patient Power. You should try to know as much as your doctor does and question your doctor and bring articles in. Say, have you read this? Did you hear about that? And then you’ll know if you’re with a good hematologist/oncologist.

Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff 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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