Newly Diagnosed With CLL: What Do You Need to Know? - 3 | Transcript | Chronic Lymphocytic Leukemia | Patient Power


Newly Diagnosed With CLL: What Do You Need to Know?

Andrew Schorr:

…one thing I think we should assure people about is that you have lines of treatment now.  So you have ibrutinib (Imbruvica) that's approved, and then you have other lines of treatment like, well, Gazyva, or obinutuzumab, as opposed to rituximab. 

You have venetoclax, or Venclexta, and you have others coming. 

Dr. Thompson:

Yes. 

Andrew Schorr:

So if you find that despite your best efforts something isn't working, you've got somebody in the batter's box, right? 

Dr. Thompson:

Yeah, absolutely.  So that's a very important thing to keep in mind.  And I guess that also speaks to treatment goals.  So for some patients the idea of getting cured is extremely important, but for other patients, they may say, well, you know, if I take ibrutinib every day and it works for 10 years I've still got venetoclax down the line.  I've still got other treatments.  There are all sorts of things coming down the line that almost seem like science fiction, like CAR-T cells, which people may have heard of.  So definitely there are lots of options for patients whose disease has relapsed after initial therapies.

So that's important to keep in mind when you're talking about what the first treatment is going to be.  But we do like to, you know, with the first treatment, some of the clinical trials that we've been doing, we've been trying to target the treatment paradigm to specific patient populations, like I was saying, but overall what we've been trying to do is design a treatment that has the least amount of toxicity to get the deepest response that we possibly can and the longest remission, hopefully without needing indefinite therapy.  And so that's where we're moving with the clinical trials. 

But for a lot of patients that are not on a clinical trial, indefinite treatment with an oral medication is still going to be a really good option because you can get a prolong disease control that way. 

Andrew Schorr:

Okay.  Susan, you're probably familiar with this now.  There are some pretty sophisticated tests coming out for what they call minimal residual disease, MRD testing, to see is a treatment working, or is it knocking back the disease to undetectable levels.  And now with a test that you're well aware of you can look for, I don't know, one in a million CLL cells, I mean really supper sophisticated.  So that's coming now to see, are the treatments that Dr. Thompson and his colleagues are doing, how well are they working, right?  Not just did they shrink the lymph nodes or do you have less fatigue, but what's happened with the number of cells, right? 

Dr. Leclair:

Right.  Originally the concept of remission, which is the word that we used, was we didn't see anything noticeable in you, but that was a clinical remission.  That meant that your white count would drop down to an acceptable level of CLL.

But that's kind of a gross testing.  Yes, you feel better, but I don't know how much leukemic cells you've got in your lymphatics or in some other part of your body.  So there became a—sadly gradual, but it became a process of getting to be more and more sensitive in your testing.  For example, if you take a half gallon of any liquid, dump out the liquid actually, put one black marble in there, fill all the rest of that half gallon with white marbles, that's what we want to test for.  We want to be able to see—a half-gallon is about the size of your normal bone marrow, so we want to be able to see if there's one bad cell amongst that.  We can't do that. 

It's just too, too precise, too sensitive a level.  We can though say that you only have a million cells—I know that sounds like a huge number, but when you have in scientific lingo we use numbers, 10 to the 6th, 10 to 10th, 10 to the 12th, you were diagnosed with 10 to the 15th-ish cells in that bone marrow.  We can get down to 10 to the 5th now, 10 to the 6th cells.  That's a huge drop from 10 to the 15th.  That's 10 with 15 zeros after it versus 10 versus 9 versus 9 zeros after it.  That's a large number of cells.  So, yes, we have gotten more and more sensitive. 

The problem with sensitive testing, which is always the issue, is you tend to get false positives in them so sometimes a number that is barely possible or barely not positive could be somewhat iffy because the tests aren't that wonderful. 

The problem with that also is I can't tell you if you have zero cells or 999,999 cells that are malignant.  There's no way I can tell that really consistently at this point in time.  So you have to think of things like, I'm kind of like a diabetic.  It's always there, but as long as I control it I can live a healthy, high-quality life.  Maybe in a few years we'll get more sensitive than that, but right now that's the best we can give you. 

Andrew Schorr:

And I'll say that Dr. Wierda, one of Dr. Thomson's colleagues at MD Anderson, some years ago, and I was originally treated in 2000, so maybe around 2010 or 2011, I had what was available then, an MRD test. 

They've gotten much more sophisticated, and he said, well, you're not MRD negative, and I kind of freaked out.  And he said, some day you may need treatment again.  Well, I went many years.  It was 17 years between when I had the initial treatment of FCR and when later, I happened to have Gazyva, or obinutuzumab, and some steroids is what I had, but anyway, that was last year, but it was a long, long time.  So while I was not MRD negative I lived my life. 

And so, Carol, I wanted to talk to you about that, living your life.  Whether it's watch and wait or watch and worry, or in between remissions or never knowing how long a remission is going to be but it's still there in even barely detectable levels going on with your life.  What would you say to people about living with CLL rather than that being really depression on your life?

Carol Preston:

Go on with your life.  I mean, that is--when I was originally diagnosed, after I picked myself up off the floor, when I was treatment, and this was before I went to MD Anderson, but when I was in treatment—I'm a communications consultant and I do workshops.  I was still flying, oops, I was still flying.  I was working, commuting.  Perhaps I didn't clean my airline tray as best I could, but I just kept on going on because feeling normal is what keeps you going.  If suddenly you recede or you pull back from everything then you can't go on. 

Then suddenly cancer wins.  Cancer takes over.  And cancer patients who have survived—and I know there are a lot of cancer patients there are so many different kinds, that they do get sidelined.  They have to stop.  They have to take precautions. 

But not only feeling normal but talking to the company with which I work on consulting, and my boss said to me, if you tell me you can do it, then I'm going to let you do it.  You will be assigned.  He said, if you tell me you can't, then we won't.  And he said that was our deal, that I would be honest and he would be honest, and it didn't prevent me from doing anything. 

Now, I was fortunate enough, it's never fortunate to get a serious diagnosis, but that both of our sons were already grown and basically gone in graduate school, working.  I'd have to think back about where they were, so I didn't have the additional challenge of taking care of young children. 

And I do have a spouse.  I would call him more of a partner than a caregiver, and he will be the first to acknowledge.  He said I didn't do—I didn't do much caregiving, but he was always there.  He went with me when I needed him to for appointments and so on and so forth. 

But I also developed a ring of people of support, support on whom I could draw when I needed it.  For example, under my original treatment I was given diphenhydramine (Benadryl), which makes you very sleepy and you're not supposed to drive if you've been on Benadryl.

So my husband was working at the time, and I made arrangements for support people to pick me up.  And, by the way, there's a wonderful tool now—there are probably many, but the one that is very prevalent, and I'll just pass this along to patients who are looking to line up their team of support, it's called SignUpGenius, all one word, SignUpGenius, where you can create a template.  I need to be driven to the doctor this day, I need to be picked up this day, and people can sign up.  They can check it off rather than making phone calls, which is exhausting. 

Because the hardest thing to do is really to pick up the phone and make these calls and ask.  But this is a way that you can solicit and elicit support, and everybody wants—then people say ah, now I know what I can do.  Make a meal.  Now I know how I can help. 

So there are lots of cool tools.  And I know that this is a wide-ranging discussion on newly diagnosed patients, we all have so up much information, but I get very excited about the ways that we can reach out and have many people touch our lives and help without feeling like they're interfering or without turning away.  So many times people don't know what to say, and as Susan, you said earlier, so they say, well, you know, if you had to have—and I had many, many people by the way who said that to me well, if you had to get a cancer, this is a good one. 

Andrew Schorr:

No cancer's good. 

Dr. Leclair: 

That's right. 

Andrew Schorr:

No cancer is good.  Let me just—as we begin to wrap up I want to mention a couple of things just quickly for me.  First of all, you, Mr. or Ms. with CLL, are not alone.  Not only do you all the people on our screen here but you have thousands of other people who have gone before you. 

And then the other thing I would say is, and Carol and I are big believers and I know Susan is, and Dr. Thompson is very accepting, walk in to that doctor you trust and ask questions.  Have your list of questions.  We got this test result back, you know, and here's what it says.  What does that mean?  Or you use these acronyms, whether it was FCR or ven plus this or I plus this or some other thing or a clinical trial, I don't get it.  Wave your hands, I don't get it.  Please say that in English, right, Susan?  You're a big believer in that. 

Dr. Leclair:

Absolutely.  And I want to add to what Carol was saying.  Find—the single best thing you can have is your pen.  When you have a question write it down on a piece of paper.  Bring that piece of paper in to your physician.  If you don't want to read it, hand it to him or her and say, answer these questions. 

And if you do have someone who comes with you, have them take notes.  Again, I'm going to steal Phil's thunder and say that a lot of physicians will say that the immediate first sign of a serious diagnosis is deafness because the physician looks at a patient and says, I'm terribly sorry but you have, fill in the blank.  And then that physician begins to talk about whatever it is that he or she feels like talking about.  You, however, have become deaf because the last word you heard was "leukemia" or "cancer."  Bring someone with you to take notes because you're not going to. 

Have them put a tape recorder on the desk because you're not going to believe your husband's or wife's notes.  I know we've been through this in my family.  I know this.  So you need to have someone there to fill in the gaps until you can catch up, until you can take over. 

And that is a critical thing to have, a pen and a person to help you discuss things with your physician.  Sorry, Phil. 

Dr. Thompson:

No, I couldn't agree more.  There are two things that prevent people from remembering.  The first is the shock of the diagnosis and the fact that—there are either some people seem to go blank and some people I think start ruminating about all of the negative ramifications of what this might mean and therefore can't understand the next series of things that you say. 

But the second thing is you then start talking about concepts that this person has no background in, background knowledge in.  And it's very, very difficult to—it's like you imagine trying to remember a random series of letters or a random series of numbers.  It's impossible.

And that's what this is like.  You know, when people start talking about an immunoglobulin-heavy chain gene, you don't know what an immunoglobulin heavy chain gene is.  Or a SF3B1 mutation.  Some people don't even know what a chromosome is.  You know, it's very difficult to remember these types of things.  So if you write, I think if people write them down on have their support person with them who writes them down it gives them the option to then go away later and say, okay, he mentioned all of this, and then they can look it up.  And at your leisure you can go and read all of these things.  And then I often find people will come back to me at the next appointment or even shoot me questions afterwards and say, you said this, and I was doing some research and I just wanted to clarify these things. 

And I always find that to be a really important part of the process, is those kind of subsequent clarifications of what at the time was just information that the person had no handle on. 

Andrew Schorr:

Phil, I want to get one final comment from you, and it's what I've asked you before.  It's about hope.  So here we are, our audience of newly diagnosed people and family members, and we can talk about chromosomes and we can talk about ranges of treatment, but tell, me as a CLL specialist, should I be freaked out or in this particular disease do you feel you have or are developing the tools that can help me or my loved one probably live pretty well for a long time, probably. 

Dr. Thompson:

I would say exactly that.  Are I say to most of my newly diagnosed patients, and there are always exceptions, but for most people they're going to live a long life and a life with good quality. 

And those two things are both very important, and in some cancers they may not necessarily marry up.  Some cancers have treatment that's so toxic that it may make you live longer but your quality of life suffers.  I think in CLL we're very fortunate that we can select therapies that are both extremely effective but also are well tolerated and lead to good quality of life.  So I would say for the vast majority of newly diagnosed patients with CLL there's a huge amount of hope. 

I can't say to a patient don't worry about the fact that you have cancer because that's a ridiculous thing to say, but I think I can say to most people you're going to live a long life, and you're going to life a life with good quality. 

Andrew Schorr:

All right.  Amen.  What a wonderful note to end on. 

I hope this gives hope, confidence and knowledge, kind of the trademark of what we try to do at Patient Power for people who are watching and people who care about them.  What a great group.  Carol Preston, thank you so much for being with us, and long life to you, Carol and your commitment to other patients.  Dr. Phil Thompson, thank you so much for being with us from MD Anderson once again.  And go cure CLL, okay?  Go do it. 

Dr. Thompson:

We're working on it as fast as we can. 

Andrew Schorr:

Okay. 

Dr. Thompson:

I think we're getting there. 

Andrew Schorr:

Yes.  You are making a lot of progress.  And, Susan Leclair, your devotion to patients and understanding all this for decades thank you so much. 

Dr. Leclair:

I started when I was very young.

Carol Preston:

Very young. 

Andrew Schorr:

Thank you so much for being with us.  This is what we do at Patient Power.  I hope it's been helpful.  Thank you for financial support from AbbVie Incorporated for making this program possible. 

And be sure to check out everything we have on Patient Power and look for all these resources we mentioned.  You are not alone, and hopefully in your CLL case you'll do very well for a very, very long time.  I'm Andrew Schorr.  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 September 9, 2019