Diagnosed With CLL: Benefits of Getting Educated Before Starting Treatment

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Topics include: Understanding and Patient Stories

When faced with a chronic lymphocytic leukemia (CLL) diagnosis, frightening prognosis and an overwhelming amount of information, how can patients find the time and courage to get informed? Why is this so critical? During this Patient Café, a patient panel including host, CLL patient and advocate Carol Preston, Sue, Neal, Dave and Sherry, give their inspiring perspectives on why it’s important to get educated before jumping into treatment, and the difference it can make it your care.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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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.

Carol Preston:

I know for example when I heard the word leukemia, you know, for me that was a death sentence, before I knew anything.  It was totally out of the blue for me, totally unexpected, and like everyone else scared to death, frightened.  And to actually—went to the oncologist referred—to whom I was referred, took that oncologist's word that this was what I needed to do.  Was not an informed patient, was not empowered by any stretch.   

And so I'm wondering how all of you, and for those of us watching and listening, would like to know how do you push through that diagnosis?  How do you tamp that initial fear and panic to get to the next step, which is to seek another opinion, which is to just take a breath and say, I can wait another week or two or three.  I think all of you have something to contribute along those lines, please, just jump in and let's hear about that.  

So I just really started digging in.  Maybe that's me.  I was a researcher in my background, so I just started reading everything I possibly could about it.  

Neal, what about your experience?   

And again, you know, I spent a fair amount of time doing the research on my own as well, so I had several different avenues, if you will, of ways to get more educated.   

So, Dave, how did you push past that?  

And I go, no, that clinical trials is where it was at.  This was not just go find an oncologist with FCR.  Like I said, he gave me seven years and I just couldn't??that was just not the right place for me.  So I did a lot of research and found that the closest one, like I said, was in Buffalo, New York, for lenalidomide (Revlimid).  

So how do we take that pause? Where do we get the confidence to take that pause before we start jumping into treatment?  Sherry?  

I think we have to dig kind of deep into ourselves and think, am I going to believe what somebody else told me, I have seven years left to live?  How would that doctor know you're going to have seven years?  He doesn't know that.  I think we—it's all about taking responsibility for ourselves and thinking, we'll see about seven years.  We'll see about 10 years.  

But it gets down to who we are inside and the kind of internal strengths I think that we were born with, what our life experiences have been.  But we can—if we're a little timid ourselves we can listen to other people who have done this work and say, well, Dave didn't want to hear seven years so look at what he did, and I'm going to be Dave for a while, and I'm going to do what he did.  

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 October 9, 2018