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Taking Back Control: How I Became an Empowered Patient

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Published on July 11, 2018

Join us at the CLL Patient Café to hear host and advocate Carol Preston speak with a panel of five other patients with chronic lymphocytic leukemia: Sue, Sherry, Neal, Catherine and Dave as they walk through their diagnosis, treatment journey, clinical trial experience and more. How can patients better understand their treatment options? The panel also discusses obstacles they overcame, becoming an empowered patient, staying informed and ways they actively participate in their care. Watch now to hear valuable insight gained from their unique journeys with CLL.

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

 

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Transcript | Taking Back Control: How I Became an Empowered Patient

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.

Hello everyone, and welcome back to my favorite coffee shop, the Patient Cafe.  This is our virtual coffee klatch to share information, not just from me but from many other patients who have been living with CLL, chronic lymphocytic leukemia, and they're going to help their insights to support and to guide us for treatment options and living life well. 

Again, I'm Carol Preston.  I've been a CLL patient for 12 years, one relapse, in remission now since 2010, but, unexpectedly, I developed a second cancer, and I'm not alone in this because some of our coffee klatchers will share their experiences with second cancers as well, was diagnosed in December, a soft tissue sarcoma. 

I have a quick update, very positive.  My first set of post-surgical and post-radiation scans since I did the interview with Andrew Schorr by the way, it's on the CLL website, Blindsided by a Second Cancer—those scans were clean.  Having said that I have seven more sets of scans to go over the next year and nine months, but fingers crossed that they will be clean as well. 

I also want to share a wonderful piece of news since I did that interview, I became a grandmother for the first time.  And I know on this panel I am not alone in joining that very, very happy club, but I get very excited about this little baby boy, so I wanted to share that good news with you.  And really it just speaks to the importance of keeping one's eyes on the prize.  Because as I was going through a treatment for this second cancer I kept that little baby and its imminent birth in my head the entire time.  So lots of good news on my end as well as from the panel from our coffee klatchers that you are about to meet. 

Before I turn it over to them and introduce them I want to be sure that we thank the Patient Empowerment Network for its support.  The program is produced by Patient Power.  This program is not a substitute for medical help and guidance that you receive from your healthcare providers.  This is really general information, that as I said at the beginning we hope and are confident will guide you to more informed treatment centers—decisions, and become more empowered.  And, in fact, that is what we are calling today's coffee klatch, Becoming a More Empowered Patient. 

We have a robust panel of people joining us around the table with their virtual coffee cups, Sue, Sherry, Catherine, Neal, and Dave, and I'm going to let each of them quickly introduce themselves, where they're from, how long they've been living with CLL.  And then from there we will carry on our conversation. 

And, Sue, if we might start with you, then go to Sherry, Catherine, Neal and Dave. 

Sue:

Absolutely.  Good morning, everyone.  My name is Sue Dudeck.  I live in Palm Desert, California.  It's going to be 118 today.  Yeah.  And, anyway, I was diagnosed with CLL.  It's been five and a half years.  It was in January of 2013, diagnosed in a routine blood test.  It became very aggressive.  I went into treatment the following June, and I am now in remission, which is wonderful.  Feeling great, and continue to do well, other than the fatigue. 

Don't know what else you want to know at this particular point.  I would have to say that I was pleased to have found Dr. Kipps at UC San Diego, who is my physician, and I am 17p deleted, so that meant that I had to have some rather unique and different treatment approximate plans, but so far, so good. 

Carol Preston:

And, Sue, I'm also 17p deleted, and to echo you, so far, so good.  All right. 

Well, let's talk to Sherry.  Good morning. 

Sherry:

Good morning.  I'm Sherry Gardener.  I live in Fort Collins, Colorado.  And I have known that I had CLL since 1999.  I've probably actually had it since 1996.  I'm fortunate to have one of the lower risk varieties.  I have a 13q deletion, but I've had treatments off and on over the last how many years, 18 years or so.  I've been in remission now for a little over two years.  My last treatment was with idelalisib (Zydelig), and rituximab (Rituxan). 

I'm very fortunate that my hematologist is Dr. Clive Zent at the University of Rochester in New York, so I travel there three, four, sometimes more times a year because he's a star and I figure we only have not that many chances to get it right. 

Carol Preston:

Well said.  Catherine? 

Cathy:

My name is Cathy Sheck, and I live in the small town of Pine Grove, Pennsylvania.  I was diagnosed in July of 1997, so next month will be 21 years for me.  Probably what's a little unique about me is I'm a registered nurse, so I went from being the caregiver to the patient, which is an adjustment for me.  I have—I'm on my fourth agent currently.  I had FCR, and then I was tried on ibrutinib (Imbruvica), which I failed because of bleeding issues.  And then I did obinutuzumab (Gazyva), which had no effect. 

So I'm currently in a Phase I clinical trial at Penn in Philadelphia, an oral agent, the next BTK inhibitor, and so far it's been working.  I am not in remission, but I'm controlled. 

Carol Preston:

That's good news and persistent.  And hopeful news. 

Cathy:

Yes. 

Carol Preston:

Wonderful.  All right.  And then rounding out our klatch this morning, Neal, and then Dave. 

Neal:

Good morning.  My name is Neal Rosen.  I live in San Mateo, California, which is on the peninsula south of San Francisco.  And I was diagnosed just about three years ago, I think in about a week or so, so happy anniversary to me.  I had a pretty quick onset of the disease, and so I started chemo within about a month of diagnosis, went through five or six rounds of FCR, and at this point am in remission. 

Carol Preston:

That's great news, and we're going to hear more about your empowerment moments right after we hear from Dave and say hello to him. 

Dave:

Hello.  I'm Dave Weisler from Metamora, Michigan.  I've been—I'm 11q.  I've been in two clinical trials.  The first one was with lenalidomide out in Buffalo, New York, with Dr.  Shamacan, and the second one was at Ohio State, and it was for three treatments.  It had obinutuzumab, lenalidomide (Revlimid)—excuse me, ibrutinib and then finally venetoclax (Venclexta), and I'm MRD negative. 

Carol Preston:

Fantastic news.  That's the news that we'd like to hear.  All right.  Well, you've met our wonderful panel sitting around our virtual coffee table today, so now let's get the conversation going.  First of all, what I've picked up from these introductions, a couple of things.  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 ah-ha 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 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, half way 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.  

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