Michele Nadeem-Baker: Why Testing Is So Important

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Topics include: Patient Stories and Understanding

Why is testing in chronic lymphocytic leukemia (CLL) essential? Michele Nadeem-Baker, a CLL patient reporter, shares her journey with CLL testing and discusses why CLL testing is so essential and why it’s important to see a CLL specialist. 

Please also watch these videos to learn more about CLL testing:

CLL June 2017 
Which CLL Tests Should You Have and When?
CLL Testing: Before, During and After Treatment
Webinar Replay | CLL Lab Tests? What Follow-Up Tests Will I Need?
How Does Genetic Testing Affect CLL Treatment Options?
Genetic Testing: What Version of CLL Do I Have and How Do I Treat It?

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Transcript

The first would be really based on what I have gone through, and I want to share with you a little story as to why I think testing is so essential.  When I first learned that I had CLL I had testing not at Dana-Farber. My first opinion was elsewhere, another part of the country, and I was basically just told that I had the C word and then CLL without even telling me what the acronym meant.  

The tests were not the full range of test spectrum that I've seen now at Dana-Farber Cancer Institute, and I was not told what any of my markers were.  I was just told that I had it and I didn't have to come back for another exam or appointment for another six to 12 months.  And that was about it, and I just left.  So this is one of the reasons, as those who have followed me have learned, that I am driven to help other patients to make sure that they do not have the lack of information that I had.  So it's important for you to get that testing.  

It's important for you to also, what I've learned, is to make sure you get a doctor that specialized in CLL, not only an oncologist and an oncologist?hematology but one who is familiar with CLL and all the different variations of what the disease is, which is another reason why all of the tests are very important and why you should continue to do them.  

Patient Power had a series of programs with Dr. Kipps, who also happens to be Patient Power founder and CEO Andrew Schorr's personal oncologist for his CLL, and Dr. Kipps has all of these programs such as what and which lab tests are essential—we'll talk a little bit about that—he also talks about can your test results change. 

So getting back to which lab tests are essential, as you know, blood work is the first way to find out if you have CLL, and you would have a complete blood count as well as eventually a FISH analysis, which is going to tell you some of your markers and indicators and flow cytometry.  And these will show you things such as 11q, 13q, 17p, alphabet soup.  You know, p53, MRD, it's just—the list goes on and on, but those will help determine the course of what's going to happen with your own CLL, how it progresses, and then for your doctor to determine with you what course of action you need to take in treatment.  

And in addition to those tests your doctor—it's important to not only have tests but also to ensure that you keep your medical appointments with your oncologist because he's going—he or she will be testing you to see some of the other things, such as do you have night sweats?  Your lymph nodes, how swollen are they?  How many are swollen?  Is your spleen swollen?  Other tests will be brought in at this point to see such as CT scans, bone marrow biopsy—not my favorite—will also help determine this.  

And my last Patient Power report you can look at, and I believe my producer will be putting a link into the comments section, that shows all of the myriad of tests that you can have, that you have the good, the bad, and the not so pretty, especially the bone marrow biopsy, but all these will help determine how progressed your disease is, if your watch-and-wait time continues or if it's time to stop watching and waiting and time to jumble into treatment.  

Which brings me to the next point.  So my lab test, why is it important and essential that you have all of these different tests and that your doctor is testing you for your CLL in all these different ways, and that is to determine your genetic markers.  Mine in particular as an example are an 11q, and I am IGHV unmutated.  This helped determine the course of action, the treatment that my doctor prescribed for me, and that was a combination therapy, which is very popular now, and the one I am on, because again it's for my markers is 11q, it's for 11q, and IGHV mutated and it is FCR, which is what used to be the gold standard of treatment, and the standard treatment, but it does not work for everyone.  

But I have gone through FCR for six months and ibrutinib (Imbruvica) indefinitely.  So in addition to the FCR for the first six months I concurrently took the ibrutinib, and I'm still on that, and I am doing well on it.  Now, for some people the FCR would not work, and that's all up to again your markers, so again all these reasons why it is important that you have the lab tests.  Dr. Kipps does review this in some of his Patient Power programs, as do other doctors.  

Dr. Jennifer Brown, who happens to be my doctor at Dana-Farber, talks about genetic markers, genetic mutations and why it's important on another Patient Power program, which will also be put into the comments section.  

But I shared with you my genetic markers, my prognostic indicators, and I would love to hear what yours are.  But I also wonder, could you just let me know, an informal poll right now, how many of you even know what your prognostic indicators—otherwise known as genetic markers—how many of you out there that are watching know what yours are? I didn't even know what mine were to look at them until I met Andrew Schorr, when he said to me, one of the first things he said, so what are your genetic markers?  What are your prognostic indicators for CLL?  And I felt silly.  I did not know.  

But from that point on I realized how important they were and that it really is one of the first things that those in the community will ask, and it is one of the things, one of—about the most important things the doctors will look at.  So for all of you out there watching now live or watching later, do you know what your indicators are from your testing?  Are you 11q, 13q, 17p?  Are you p53?  Do you know your MRD status?  If you could let us know.  And if you're a little shy right now and not answering, that's okay.  You can come back and comment afterwards when you watch this again.  But it would be great to know.  

But also the other thing to know is I've shared my treatment, my combination therapy.  We would also love to know what kind of treatment are you on for your particular prognostic indicators because it really does depend on what you have.  It's not one-size-fits-all.  The same treatment is not good for everyone.  For some of us one thing will work and another won't.  So we're also wondering that.  

I would also like to find out from all of you if you were aware of such a thing as genetic markers, or even like I was, naive and didn't really realize it was such an important thing.  

So the other thing I want to get across is that your—the importance of follow-up testing.  And Dr. Kipps also has a program on this. He's like my best friend for this particular program, but he also talks about the importance of this because your FISH analysis can change.  Things can change.  Mutations change as we go through life, and it's very important to do this, because this again will help determine your treatment.  

So I am a person who actually had their genetics change, modifications, I guess you would call it. It's not that it changed but I had modifications, and that determined that I needed treatment more quickly than we had originally thought.  So that threw me into treatment pretty quickly at that point.  I still went through watch and wait, but otherwise we thought that my treatment was going to be a while later when, in fact, the mutations, the modifications are what had me going to treatment sooner.  

So we're hoping that you're learning from this.  The top three things why you need genetic testing.  Anyone out there know now that you've seen this?  You need to know why your lab tests are essential, which lab tests are essential and what and why and when.  So the when will determine when your watch-and-wait period is over, very important.  The follow-up testing is very important so that you can find out if you have any modifications, which would make you have treatment more quickly.  And how your genetic treatment will affect your—I'm sorry, genetic testing will affect your treatment.   

And the other point that I had made at the beginning that I would just like to reiterate is that it is so important the doctor you have understands CLL.  Otherwise, you might just be treated without even understanding what it is that you have.  You might not be getting the best care that's available, the most advanced care that's out there.  So it's very important to have a patient?doctor partnership because, in the words of Patient Power, knowledge is the best medicine out there.  For Patient Power, this is Michele Nadeem?Baker, a CLL 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. 

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Page last updated on March 28, 2019