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Susan Novick: Everyone's CLL Journey Is Different

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Published on April 10, 2015

Diagnosed with chronic lymphocytic leukemia (CLL) in 2006, Susan Novick had never heard of the disease. Now, years later, Susan joins Patient Power to share her journey through diagnosis and treatment. Learn how the encouragement she received from a CLL specialist continues to give her hope about the future and why she feels each CLL patient has a unique story.

Sponsored by the Patient Empowerment Network, which received educational grants from AbbVie and Genentech. 

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CLL Global Research Foundation Banner MD Anderson Cancer Center

Transcript | Susan Novick: Everyone's CLL Journey Is Different

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. 

And I went to the waiting room. And there was a man in the waiting room, and we just started a conversation. And he asked me what was going on with me.  He had CLL also. And when I told him I was going on this Revlimid trial, he immediately said, don't do it.  Don't do it.  I did that for—I didn't even last a month.  It's awful.  

And many, many, many years ago, I taught natural childbirth for a few years, and I had a whole classful of pregnant ladies and their husbands. And I said to each of them at the first class, everybody has a story.  You're going to hear them, and your story is not their story—no matter what you hear.  And that was the first thing I thought of.  Your story is not my story. 

And my—I was very successful with Revlimid.  So I think that it's very important to remember everybody's different.  Everybody reacts differently, and everybody has a different story and a different outcome. 

Susan, so you're pretty hopeful now going forward.  You may need treatment again, but you're pretty hopeful for a long life, if CLL can't be cured keeping it at low level.  

And I remember Dr. Keating telling me once during a visit at some point, you know—you know Dr. Keating.  He's a wonderful man.  He's very caring.  And I remember he came right up to me and looked me straight in the face, and he said to me, you are going to live a long time.  I'll never forget that.  He doesn't—I don't know if people like that realize how much hope they give to patients and how much confidence, and I felt—I believed him, and I still believed him.  I do. 

I'm Andrew Schorr.  Remember, knowledge can be the best medicine of all.  

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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