ASH 2018 Annual Meeting: A Patient Perspective on CLL Treatment Developments

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Topics include: Understanding and Patient Stories

From the 2018 American Society of Hematology (ASH) annual meeting in San Diego, chronic lymphocytic leukemia (CLL) patient Lee Swanson joins Patient Power to share his story; from diagnosis, to watch and wait, clinical trial participation and more. Lee also discusses why it’s critical for others to find a CLL specialist and get educated about their condition and gives a patient perspective on the treatment research announced at ASH. 

Sponsored by Pharmacyclics.

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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.

Andrew Schorr:

Hello from San Diego and the American Society of Hematology meeting.  I'm Andrew Schorr from Patient Power, and I'm with another CLL patient, Lee Swanson, who is also from San Diego.  We both live here, both living with CLL. 

Lee, first of all, welcome to Patient Power.  Tell us a little bit about the story of your diagnosis. 

Lee Swanson:

2007 I went to my primary care for a physical, and he called me the next day and said, I want to do this blood test over again.  There's something abnormal here.  So I went in, and they sent me to a hematologist, and he sat me down and he said, you have chronic lymphocytic leukemia.  And I said, what in the world is that?  I've never heard of that.  And he said well, it's treatable.  It's not curable.  We don't treat it until you have symptoms.  Go away.  Come back in four months.  We'll do another blood test. 

And that's pretty much all he said.  I kept saying, so, what's this mean?  What, you know, you just told me I have cancer, and you're not going to treat it.  I've never—you know, people, I have cancer, and they caught it early.  Now you're telling me we caught it and you're not going to do it.  And then he had nothing to say. 

And so I went to the internet and, you know, drank out of that fire hose and found a CLL specialist, who was also in San Diego just down the road, and was able to get an appointment with him, and I've never looked back. 

Andrew Schorr:

Right.  And that resulted you being in a clinical trial, which has been successful for you.  So what do you want to say to another patients in an increasingly complicated world of CLL, and also, as you said, people like me and you diagnosed with something we never heard of so that they get what's right for them? 

Lee Swanson:

Well, in a lot of ways managed healthcare means you have to manage your healthcare, and if you have a doctor who either isn't familiar with CLL or whatever it may be or isn't communicating with you, you have to look somewhere else.  And find a specialist.  I think that a lot of people are told they have cancer and they think, well, I'm seeing an oncologist.  That is a specialist.  Not necessarily.  Find someone who specializes in your disease. 

Andrew Schorr:

Right.  And certainly there are many community doctors who treat a lot of cancers, but where with you being the spark plug may getting them consulting with a subspecialist in CLL and together can execute a plan for you.  So you can bridge that gap, but it's often you, the patient, that makes it happen. 

Lee Swanson:

Doesn't mean you have to move or you have to go across the country to see a specialist, but you've got to get in contact. 

Andrew Schorr:

Right.  So you're here at this meeting, Lee, and you're living with CLL.  Are you encouraged with what you're hearing so that there are options for us and those folks to live a long time? 

Lee Swanson:

I really am.  I talked to a doctor earlier today who said—and I said, so what's coming up in CLL research?  And he said to a large extent we have the colors.  We now just have to paint the picture.  So there are other things that are still experimental, but the things that have been approved are pretty solid. 

Andrew Schorr:

I'm encouraged.  Well, okay.  Long life to both of us, right? 

Lee Swanson:

Indeed. 

Andrew Schorr:

And thank you.  And we're going to be smart consumers.  That's what it's about.  I'm Andrew Schorr with Lee Swanson here in San Diego where it's a very positive story for us with CLL as long as you play an active role in your care or the care of a loved one who's living with CLL. 

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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Page last updated on December 21, 2018