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.  

Sue:

Well, if I would—I could go. I'm one of those that I immediately got on the internet.  I mean, literally from the first time I heard from my doctor I got on the internet.  I started researching it.  I called my mom, and I said, mom, does anybody in the family have leukemia.  She couldn't recall that, so I figured at that point it was probably not hereditary.  

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.  

Carol Preston:

Okay.  So that's one way.  Of course, a lot of times people feel intimidated.  There's so much information on the Internet, thousands and thousands of pages, so all of you seem to have waded through that.  

Neal, what about your experience?   

Neal:

Well, as I said earlier, I had the good fortunate, again if that's it right word, of having a good friend who had been diagnosed, and so he was able to share some of his insight.  I also had a friend who actually was one of the first patients treated with imatinib (Gleevec) for AML, and he's very close to Dr. Drouper, and so he was a good source of information.  

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.   

Carol Preston:

Getting on the Internet and doing all of this research has been described sometimes as drinking from a fire hose with many of us feeling we need to absorb information.  It's the equivalent of getting an M.D. in the space of one, two or three weeks.  

So, Dave, how did you push past that?  

Dave:

Well, first of all, I didn't—I had trouble with my oncologist's diagnosis that I had seven years and that was about it.  Three trials of FCR I assume, and I just couldn't, I couldn't see myself there. And I'm a school teacher, so we're used to researching.  And I first went on and looked at all the different websites.  Obviously, Patient Power was one of them I looked at and did some research.  There's a place also called PubMed.  I don't know if you're familiar with it.   

Carol Preston:

Yes.  

Dave:

Okay.  It's all the research being done.  So I went there and looked on what was going on, what were the trials, what were the results.  I'm a statistician, so I could read the research, you know, and the probability. And that got me going.  And then, like I already mentioned, that one place has a clinical trial place where I saw other people.   

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).  

Carol Preston:

When we pause and we take the time to do the research, that to me is the biggest challenge because so many people just want to get the cancer out as fast as they can.  And that was my approach.  It was not a good approach, obviously, twelve years ago.  If I had taken a little more time I might have had one treatment.  Of course hindsight is 20/20.   

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

Sherry:

Well, that's a really good question, especially for me, it's hard to answer because I'm—I'm a pretty impatient person, but I've also spent a lot of my life in academia.  I'm a clinical psychologist, and, like Dave, I am accustomed to doing research.  So I too went to pubmed.gov and put in CLL and found the researchers who were doing the gold star work in CLL, and that's how I chose the subsequent docs that I went to see.   

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.  

Carol Preston:

And that's why this Patient Cafe, this discussion that we're having is so very important for people to muster up the courage, if you will, to take a breath.  

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.