Personalized Care and CLL

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Topics include: Treatments

Is personalized CLL care and treatment now a reality?  Patient Power Founder and Host, Andrew Schorr, who is also a CLL patient, explores this question with expert Dr. Nicole Lamanna.  Together, Andrew and Dr. Lamanna discuss the ever-changing landscape of CLL and the new role of patients and doctors in this era of personalized medicine.

Provided by CLL Global Research Foundation, which received support from Acerta Pharma, Gilead Sciences, Inc., Pharmacyclics, Teva Pharmaceutical Industries Ltd and TG Therapeutics, Inc. and the Patient Empowerment Network, which received support from AbbVie Inc. and Genentech Inc. It was produced by Patient Power in partnership with The Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center.

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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. 

Andrew Schorr:

Hello and welcome to Patient Power. I'm Andrew Schorr. I'm sitting with a noted expert in CLL, and she's become a friend over the years, Dr. Nicole Lamanna from Columbia University Medical Center in New York, thank you for being with us.

Dr. Lamanna:

Thank you for having me.

Andrew Schorr:

Dr. Lamanna, so we hear this term personalized medicine across medicine.  People with CLL say how can CLL care be personalized for me, knowing that it seems like there are more medicines than ever before.

Dr. Lamanna:

I mean, you know, CLL is of course a—we don't have a cure for CLL. And so as we've learned more about the biology and we have all these new medicines, the fact is that we still have to individualize what might be relevant for one might not be relevant for another.  And, of course, there are side effects that you can encounter with even some of the older medicines and some of the newer medicines, and so we have to be taking that into account. 

So when we're talking and sitting down with somebody, and we're going over what might be the best treatment options for them, part of it has to do with the biology of their disease. Part of it has to do with what other medical problems they might have, how old they might be, what kind of frailties they might have, their ability to go back and forth to the clinic.  So you actually sit down and really sort of personalize what you're doing with that patient because, as I said, what might be relevant for one may not be relevant for another, or you might choose different options depending upon all these factors.

So CLL is very different than other cancers where there might be a very rote—or I don't like to say cookie?cutter—but a more exacting paradigm of how you treat that particular disease. CLL's not yet that way. The disease is very heterogeneous. There are many ways to treat this and many options. And until we find a cure and if there really is one treatment that fits and takes care of everybody, that's a different story. But we don't have that yet, so it's really, really important to sit down with your physician and then go over all these different options, and obviously that's what you're going to discuss. So it is very personalized up to now.

Andrew Schorr:

All right.  You're a CLL specialist.  You give lectures for doctors as well as patients.  Many patients don't always get to see someone like you who really just specializes in CLL.  They have a very well-meaning doctor, but they may treat many cancers. What kind of dialogue can they have with them so they get the best for them in a situation where their CLL treatment may be different from the other treatment who just came in… 

Dr. Lamanna:

Yeah.

Andrew Schorr:

…the other patient.

Dr. Lamanna:

You know, obviously because it's a rare disease, and most of the blood disorders are, compared to the solid tumor cancers, breast cancer, lung, colon, prostate, CLL and the other blood disorders are more uncommon, so it is obviously most oncologists are not treating leukemia.  So we understand that there is a little bit of a difference and hence why we are giving lectures and going around the country and trying to teach them not only about the biology but about the new drugs and about the side effects of the new drugs and maybe who to avoid them in or who it's really important to start them in.

And so for patients if they—I think that if most oncologists—most oncologists have no problems, if they think that there's something unusual or they're not, you know, not sure, they usually reach out to somebody that they know might be a specialist in that area. And I always think that's a good indicator for a patient, so that if there's a question and your physician can't answer it but they're willing to reach out to somebody and they have no problems talk—because not everybody can trek into Manhattan or into a major academic university setting to see the specialist in CLL.  

And so I understand that. And so a lot of physicians will call me or I'll see a person and then they go back to whatever state they're from and then we sort of share. Or if they have ideas or they need to bounce off issues with me, they call.  And I think if a physician and a patient have that kind of relationship and the physician has no problem doing that with someone else, then that's okay.  Then they understand that there's always somebody they can go to, and it's more comfortable.  

I think if—it's a red flag if your physician is not happy that you're seeing somebody else and coming back to them, then maybe you should look around.  There might be something wrong if they're really uncomfortable about that. Because I don't expect them to understand everything when they're treating breast and lung and colon. 

Andrew Schorr:

And in CLL now because you have many choices, and the variability of the disease, that would be important.

Dr. Lamanna:

Yes.

Andrew Schorr:

So I understand that particularly when somebody is newly diagnosed, how are we going to start?  But, for me, like I was treated with FCR years ago.  I may need treatment again.  The landscape has changed.  How do we make choices about a second therapy? 

Dr. Lamanna:

And that actually gets trickier. You know, we always argue about frontline therapy, but believe it or not the multiply relapsed or people who need more therapies along the way, that's more artful.  That absolutely get trickier, because part that depends on has the biology of their disease changed?  Are their cytogenetics different now?  How are they now?  Are they more frail than they were 10 years ago when they first started therapy? Also, what other medicine—what was their response to that therapy that they initially got or to their prior therapy?  And what kind of toxicities do they have to that therapy? 

So depending on some of those issues, that may change what you're giving them in subsequent lines of therapy, their response duration, the toxicities and their biology now.  So you have to take that all into consideration when you're picking multiply relapsed patients and what therapies might be better for them.

And then, of course, there's the relevance of newer therapies and obviously therapies on clinical trials, and that's a whole different issue.  

Andrew Schorr:

Well, given that, though, the whole landscape including what's on clinical trials, for somebody who is relapsing, how do you feel about the range of options you have rather than saying we're finished?

Dr. Lamanna:

Oh, no, no, no.  Obviously, the good news is that there [are] lots of options. There [are] lots of new options. There's even tweaking of old and new together, and so there's so much more available now for CLL patients than when we started with chemoimmunotherapy—albeit you did very well, but obviously there [are] a lot more choices now.  And so you can—there's much more in our armamentarium to treat CLL, which is good news for the patients.  Also if there are side effects there's good news that we can actually alter therapies. There [are] lots of different things we can do now that we couldn't do before, so there [are] many options. 

Andrew Schorr:

But it seems like the patient, the family need to play an active role.

Dr. Lamanna:

Yep.  I mean I think that if—the more—of course, the more they know about their disease is obviously wonderful.  I mean, you know, it's easy—usually I see two main types of patients.  One, you go, whatever you want, doctor.  Whatever you think I should do, I'll do.  And then the other ones who come in with questions, and it's actually, you know, very good to have that dialogue, because they know a little bit something. Or if not, they're inquiring about what they don't know and what the side effects are, and you can have that thoughtful discussion. 

Usually I'm having that with the ones who don't want to know, but literally there's some—sometimes they're like, it's too much information for me.  Just tell me what I really need to know and get me through this.  But it's always nice if you're an advocate for yourself. Then if something doesn't seem right, you can either obviously question what's going on or make a decision that maybe I should go seek another consultation with a specialist because something doesn't make sense here. So it's always good to be—no matter what, whether CLL or otherwise. 

Andrew Schorr:

And in the age with more oral therapies, you're taking more of the medicines yourself.  

Dr. Lamanna:

It's on you. 

Andrew Schorr:

So you need to understand. It's on you. 

Dr. Lamanna:

I mean, just like if you have high blood pressure or diabetes or heart disease and you're taking other chronic medicines, all the side effects of those medicines or the interactions, that's on you. Compliance.  So all those issues, so you have to take a very relevant role, because now with some of the oral medicines that are chronic, you know, we have to see how that goes. And so it's really relevant and important. It's not just an, oh, here's a short course of therapy, you're done, and then you're going to be observed again. And so now it's a longer term commitment on your part, and also there might be side effects or toxicities that could occur later depending upon which oral therapies you might be on, and so you have to be aware of that.  So it's a constant dialogue. 

Andrew Schorr:

Dr. Nicole Lamanna, thank you so much for being with us on Patient Power once again. 

Dr. Lamanna:

Thank you for having me.

Andrew Schorr:

Andrew Schorr reminding you to have that active dialogue with your healthcare team, so you get the very best. 

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 July 8, 2016