The Road to Empowerment: CLL Patient Perspectives on Self-Advocacy

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Carol Preston:

Number of you have been on several treatments, and the other thing that I picked up in terms of being empowered patients is that you wasted little or no time getting to major medical centers and not relying necessarily, necessarily on the first oncologist with whom you met.  

That was my situation back in 2006.  And, you know, I can say I probably wasted a little bit of time because I wasn't a very knowledgeable or empowered patient, and sometimes we learn by trial and error. So what I'd like to do is to go around, and you can all pick up from each other.  And, Dave, we'll start with you this time about basically an aha moment to become empowered.  You haven't been suffering—well, when were you first diagnosed?  Tell me again.  

Dave:

Eleven years ago.   

Carol Preston:

Yeah, 11 years ago, so you've been on a few regimens.  So tell us about how you became more knowledgeable and empowered.  

Dave:

Well, if I had listened to my local oncologist I'd died about four years ago, and so back then he said all we have is a cocktail for you, they called it.  And so I started looking into it, and I said, no, there's got to be something better out there.  And I found a website called CLL Forum, and I it had a lot of the people that were in the same boat I am looking for the new treatments.  

And that's where I found the one out in Buffalo, New York, and that lasted about three and a half years. And then, still reading, I found the one at Ohio State, which was the three-drug treatment that I really, like I said, I was—in seven months I was MRD negative, and at 14 months I was still MRD negative in the blood and the bone marrow.  And I haven't been on treatment for a year and a half.   

Carol Preston:

That's such fantastic news, and as you now know Ohio State is one of the premier medical centers for treatment for CLL.  

Dave:

Oh, absolutely.  

Carol Preston:

So your research got you to the right place in the Midwest.  Neal, since becoming an empowered patient, I know you've only been living with this, long enough certainly, but for three years.   

Neal:

Well, I was fortunate, if that's the right word, to have a very good friend here who had been diagnosed about a year and a half or so before I was, and although he has not yet undergone treatments, he did a lot of due diligence.  And so he was able to turn me on to sources of information including Patient Power.  

And, you know, I have to say that before I was diagnosed I probably couldn't have told you—given you 10 words about leukemia.  I just didn't really know much about it other than it was a blood cancer.  And I think, you know, I was referred to my oncologist by my primary care physician, who I trust a great deal, and I did get a second opinion at Stanford.  My primary care physician is with California Pacific Medical Center in San Francisco. 

And, you know, I read as much as I can and keep on top of things as best I can, and I think, you know, you really have to as a patient you have to do that.  

Carol Preston:

And, Cathy, did you have a similar experience are or—you've had quite a road.  You've had quite a path over these last 21 years.   

Cathy:

Yes, it's been a long time. Well, my diagnosis was by accident, or I shouldn't say accident but I went in for a GYN procedure.  They found it on my pre?op blood work.  And then I was referred to a local oncologist that I had a really bad experience with, which I won't go into.  I'm actually on my fifth oncologist now.   

I was going to Penn State Hershey.  In fact, I still go there.  That's my local oncologist, and he got to the point where he didn't know what to do with me anymore.  He was out of options, so he—we have a very collaborative relationship because we were both medical professionals so he talks to me very respectfully and includes me in all my decisions, and he told me to do some research, look for a CLL specialist, which I did.  I narrowed it down to two and then took those recommendations back to him and one of the ones that I had chosen was one that he wanted to recommend, so that's how I ended up at Penn.  

Carol Preston:

And Penn, you may know, is doing leading research on this CAR?T cell therapy, which doesn't involve meds at all…

Cathy:

Right.   

Carol Preston:

...but reigniting our immune systems in certain ways.  Still in experimental stages.  So, obviously also plugging and plodding ahead to get the right treatment from the right center or facility.  

Cathy:

Exactly.  

Carol Preston:

And Sherry, how about you? 

Sherry:

Well, I used to be an RN as well, Cathy, and I speak the language, and I think that that gave me a head start in becoming what we are calling a powerful patient.  You know, you can recognize quality when you've been a nurse, and you can also recognize the opposite, and I had a few false starts.  

And, finally, some of you will remember Chaya Venkat, who was so helpful to many of us in the early days of CLL with her online forum.  She suggested, she met Dr. Zent up at the Mayo Clinic, and she said, you know, I think he'd be a really good fit for you.  And so I started seeing Clive at the Mayo, and saw him there for 10 years. And now have been—he moved over to the University of Rochester to be the director of the CLL treatment and research program there, so now I go to Rochester to see him.   

Carol Preston:

From Denver.  From Denver, right?  

Sherry:

I fly from Denver, yeah. I'm spending all our children's inheritance.  

Carol Preston:

That's all right.  My supervisory doc was at MD Anderson.  I live in Maryland, halfway across the country, so I feel your inheritance pain there.  

Sherry:

Our kids will have a few things left like maybe some dishes, I don't know.  

Carol Preston:

They would rather have you than any inheritance.  Anyway, keep going.  Sorry about that.  

Sherry:

I'd rather have them too. 

I can't emphasize enough the importance of education, self-education.  What I have found very helpful in learning about CLL are some of the Patient Power forums with the experts, the interviews with the experts. In fact, one of those led me to a physician in Denver who I will see locally if I need to for emergencies if I can't get out to Rochester.  Dr. John Burke, and he's terrific too.  So education is really important.  

I think it's also important to be aware of the sources of our education.  There are some folks on some of the online forums who like to play doctor, and I think it's??it can be fairly easy to tell what's good information and what you might just pass over.   

I've also found exercise to be really important.  I was diagnosed serendipitously the day before I was scheduled to do a triathlon in 1999, so I was in really good shape.  But I had this little pain, you know, in my sternum the day before, and I thought, oh, I don't really want to have a heart attack during this triathlon. That would be so embarrassing. And so I went to the emergency room, and it was found on a CBC.  

The young cardiologist came into the room after some wait, and she looked about 12, and she said, you have CLL, but don't worry about it.  Oh.  

Carol Preston:

Freak out, right?

Sherry:

Thanks for sharing.  So I was in really good shape then, and I found that continuing exercise has been one of the best treatments both for anxiety and also for keeping this body in pretty good shape.  

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.