Chronic Myeloid Leukemia (CML)


How a CML Patient and Doctor Work Together

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Being diagnosed with any chronic condition can be challenging. Being diagnosed with cancer can be terrifying. To help manage a condition like Chronic Myelogenous Leukemia (CML), it is critical to have a close relationship with a doctor you respect and trust. Joining us is Sandra Stagg, diagnosed with CML 5 years ago, and her oncologist, Dr. Jessica Altman from Northwestern Memorial Hospital. Together they discuss the importance of the doctor-patient relationship and how to get the most out of it to ensure better care.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Memorial Hospital, its medical staff 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, I’m Andrew Schorr.  Being diagnosed with any chronic condition can certainly be challenging.  Being diagnosed with cancer can be terrifying, and to help you deal with it, of course, it’s critical to have a close relationship with a doctor that you respect and that you trust. 

In this program we meet Sandra Stagg.  She’s 46 years old, and five years ago she was diagnosed with chronic myelogenous or myeloid leukemia.  She lives in Chicago, and her doctor is Dr. Jessica Altman at the Lurie Comprehensive Cancer Center at Northwestern University in Chicago.  They join us now to help us understand how to perfect that doctor-patient relationship, and what it means. 

Sandra, tell us your story of diagnosis.  How did it happen? 

Sandra:

In 2008 I went to an annual gynecological appointment.  My doctor did a CBC, which he usually does every year, and he came back to me, and he said, you know, have you been feeling sick?  Do you have a sinus infection?  And I had had a sinus infection, so we treated that, but they retested me I still had very high white cell counts. 

So we went through a series of tests and he told me that I needed to do this, that I can’t let it fall to the wayside.  And so I went through with the tests, and they found that I had leukemia. 

Andrew Schorr:

And your reaction was? 

Sandra:

Shock.  I never felt ill.  I was living a productive life, I wasn’t tired.  I didn’t have any of the symptoms that go with leukemia, so it was very shocking. 

Andrew Schorr:

Leukemia is a strange and scary word.  When it finally applied to you, what did you know about it? 

Sandra:

Well, ironically, I remember when I was a kid, probably nine or 10, I did a book report on a book called Eric, and it was about a kid who had leukemia and died I think when he was 16.  So I knew what it was.  I knew it was a blood disease, and it was just shocking that I had it after reading that book because it was one of those books that had stayed with me through my life. 

Andrew Schorr:

Sandra, I have to ask you this:  Did you think you would soon be dead? 

Sandra:

Yeah, that was one of the things I thought.  But after I talked to Dr. Altman she gave me a lot of hope and that it was a rare form of leukemia that I had and that there was something I could take. 

Andrew Schorr:

Let’s talk about that.  So you were referred to the Lurie Cancer Center.  What happened next? 

Sandra:

It’s all kind of a blur.  I just remember my doctor, my gynecologist, he gave me a name, Dr. Altman, and I came in with my husband.  I clearly remember sitting on the bed in the room, and she told me what I had and what we were going to do about it.  And I think I was just numb for weeks, but the more I saw Dr. Altman and the more I learned about the disease and the therapy, it gave me a lot of hope. 

Andrew Schorr:

So you started a medicine that was specifically for CML. 

Sandra:

I started on GLEEVEC (imatinib mesylate).  I took that for about a year, and it started to affect my liver.  It gave me hepatitis, so I was taken off that.  I did steroids for a little bit, and then they put me on SPRYCEL (dasatinib). 

Andrew Schorr:

How is it going? 

Sandra:

It’s been great.  Both drugs, I have never had side effects.  I take it in the morning, and it doesn’t affect me at all. 

Andrew Schorr:

Sandra, have you taught about the timing of your diagnosis?  What I mean by that is just a few years ago if someone were diagnosed with CML they did not have long to live, maybe just a handful of years.  But now, in the last decade or so, there are new medicines and more continue to come out to treat this illness and treat it usually quite well.  Have you thought about how fortunate you are? 

Sandra:

Well, besides feeling so fortunate, it’s funny because people ask me, well, when you tell them you have leukemia they’re shocked and it’s a horrible thing, but when I tell them I only have to take a pill a day and that’s it, they’re shocked.  And I feel so lucky to be in a time when they have the knowledge to come up with this drug that is so unobtrusive in my life. 

Andrew Schorr:

Now, I know this isn’t true for everyone, but, Sandra, you have had no side effects? 

Sandra:

No.  None. 

Andrew Schorr:

Sandra, if somebody is newly diagnosed what would you say to them? 

Sandra:

I would say to them, initially find a doctor that you click with because I think that is so important.  Dr. Altman, she has two small children like I do, both girls, we both have girls.  She gets where I am in my life and what it means to me and that we have a rapport where I feel so friendly with her. 

Also, like you said, everybody is different.  For me, I turn to my family.  I knew right away that I didn’t want the cancer to define me.  I didn’t want it to be something that I talked about all the time.  I just didn’t want it to become this dominant thing in my life.  So I kept it close to my family, and they helped me.  I have a few cancer survivors in my family. 

Just do what’s right for you.  For some people, it’s going into chat rooms and talking to people, amassing information.  For me, it was staying close to home.  But just know that there’s hope.  I think your attitude has so much to do with it.  Don’t let it define you. 

Andrew Schorr:

How do you feel about your future? 

Sandra:

I’m hopeful.  I mean, I want to see my kids grow up.  Like I said, it has not affected my life one bit, which is unbelievable.  I do get a little anxious every time I have to see Dr. Altman, not that I don’t want to see her, but there is that anxiety every three months when I see her, but I’ve been fortunate and I’ve gotten good reports. 

Andrew Schorr:

Dr. Altman, let’s get you involved here.  Where are we now with CML?  It seems like we’ve come a long way. 

Dr. Altman:

I think it might help to take a step back.  I have not known the world of CML without tyrosine kinase inhibitors.  I graduated from medical school in 2001 when the first reports of imatinib’s (GLEEVEC) efficacy were being reported, both at the national meetings and in the New England Journal and other journals.  And so it’s truly been an exciting time. 

As a physician, I don’t remember, I don’t have the knowledge base to know what life was like for my patients before the advent of tyrosine kinase inhibitors.  But I do hear those stories through the patients that I have inherited and have gotten to know who remember life before imatinib.  It’s an incredible time. 

We understand the biology of this disease, which has led to the development of initial therapeutics.  Based on that information pharmaceutical companies and research scientists have been able to develop more potent, even more tolerable medications for individuals, and we’re now being able to specifically target specific mutations that we didn’t have.

One thing that Sandra didn’t mention is that when we first met we talked a lot about what would happen if her disease failed to respond to the available drugs, and one thing we did consider was the role of stem cell transplant.  The new drugs meaning all of the available tyrosine kinase inhibitors from GLEEVEC (imatinib mesylate), SPRYCEL (dasatinib), Tasigna (nilotinib), BOSULIF (bosutinib), ponatinib (BCR-ABL inhibitor), have really replaced the role of stem cell transplant for the vast majority of patients. 

But at the time, even four to five years ago now we wanted to make sure that we had other modalities in place should her disease failed to respond, and Sandra’s brother is HLA identical to her and would be a suitable donor should she need to undergo stem cell transplant.  But I don’t see that as being an issue.  Her disease is incredibly well controlled. 

Andrew Schorr:

Dr. Altman, let’s talk about the partnership you have with patients.  You see most patients maybe every tree months.  Tell me about how you feel about that collaboration between yourself and your patients. 

Dr. Altman:

In the beginning our relationship in terms of frequency of visits was much more intense.  I usually see patients one to two weeks after they start therapy and then a handful of weeks later to assess tolerance of drug.  We’re also checking blood work in between to make sure that there aren’t any significant alterations in the blood counts or any inflammation of any of the organs. 

To get a first look for most patients at three months to see how the disease burden is responding to treatment, we do a bone marrow biopsy at either three months or six months and based on those responses determine the next series of steps.  For most patients we’re able, if they are responding as we hope, we’re able to space out the testing to just blood work every three months.  And if patients are in complete molecular remission, no visible burden of the disease by PCR studies for a number of years, in some cases we’re able to space out visits to every six months. 

Andrew Schorr:

Let’s talk about communication.  Sandra mentioned she fortunately has not had any side effects with her medication for CML, but admittedly some patients do.  Communication, I would think, would be key between patient and their doctor. 

Dr. Altman:

I’m thrilled to hear that Sandra hasn’t experienced side effects.  I think, in my mind, the transaminitis, the inflammation of Sandra’s liver that she experienced was a side effect, although not a side effect where you had symptoms, it was an intolerance to the medication.  I didn’t feel comfortable with her staying on imatinib at that time because it was leading to what we think was an autoimmune hepatitis or an inflammation of the liver.  And that necessitated administration of prednisone, of steroids, to calm the liver down. 

And we needed to make a decision of what to do then and how to switch therapy.  So that was a point where, had Sandra not experienced that we would only be seeing each other every three months or so, but we were seeing each other much more frequently.  We were getting other consultants involved, the hepatologist, to help manage everything and make sure Sandra stayed safe and that her disease continued to be beautifully controlled. 

So I think the question that you had is how does the communication work?  I’m very fortunate that I work with a lot of other individuals.  I work very closely with a nurse practitioner and a leukemia nurse coordinator, and my patients have all of our contact information.  Every time I see a patient who is on a routine kind of three-month visit I tell them to call in seven to 10 days for their molecular results, and I expect the patient to call.  If they don’t call we will reach out to them and discuss their results with them. 

I think my patients are very well educated about their molecular results.  If they’re negative and they hear that they’re positive they want to know how concerning that is, what the next steps are in terms of reevaluation, and whether it’s a real change.  And I’m very fortunate that our patients become so involved in their care and are able to take that responsibility. 

Andrew Schorr:

So as CML has become chronic, like fortunately some other cancers have become chronic, it seems like patients can take more responsibility for their journey with the illness.  How do you feel about that, patients taking more responsibilities for themselves? 

Dr. Altman:

I think it’s wonderful, and this is a disease process that has become truly, as you say, chronic.  And I think in many ways it’s easier to treat than hypertension or diabetes, which are also chronic illnesses, and we want patients to feel empowered, to read about their disease, ask us questions, wonder why they’re having the side effects or that side effect or the response that they’re having or not and be able to push us as care providers to explain those things and to make alternative recommendations. 

Andrew Schorr:

Dr. Altman, we asked Sandra how she feels about the future for herself.  As her doctor how do you feel about Sandra’s future? 

Dr. Altman:

I feel the future is incredibly bright for Sandra.  Her disease is in complete molecular remission.  She is tolerating the drug that she’s on now perfectly, and should there be a new intolerance that develops or a lack of response, there are alternative agents that she can be transitioned to.  Should those not provide the degree of benefit we need her to have, there is always the role of stem cell transplant.  But again I don’t see that in the future. 

Andrew Schorr:

Dr. Altman, people then say, okay, I’m taking these pills.  How do you help them then take the pills and move on with their lives? 

Dr. Altman:

Just like anything, it depends on the patient, and we ask them to think about how they’ve dealt with difficulties in the past, who they’ve reached out to.  We’re very lucky at the Lurie Cancer Center that we have an amazing supportive oncology group.  We have social workers who work closely with us as well. 

And we also have links to the Leukemia and Lymphoma Society, the Leukemia Research Foundation.  Those agencies put on town hall meetings and also have mechanisms of connecting individuals with other patients who are undergoing cancer care, usually individuals with the same illness that they have. 

The other organization that we frequently connect with is Imerman’s Angels.  And those agencies are very helpful in helping patients find other folks to help support them who have been through similar difficulties in their lives. 

Andrew Schorr:

Dr. Altman, do you tell people they are on a long-term journey? 

Dr. Altman:

As I mentioned before, I think these are chronic illnesses, and I don’t expect the illness to hamper their lives.  This is something that we need to treat, we need to follow closely, we need to make sure it doesn’t impact their lives so they can do all of those other things that are important to them. 

Andrew Schorr:

So, Sandra, as we wrap this up, how do you feel about your doctor? 

Sandra:

I feel so lucky to have Dr. Altman in my life.  I mean, like I said before, we have so many similarities, that you know we have two small children and they’re girls, and I just feel like she understands where I am in my life and how important it is for me to be here. 

Andrew Schorr:

So as you can see, for a relationship to really work on all cylinders you need a patient and a doctor working together, in this case with a chronic cancer, and more and more cancers are being chronic.  We want them to be cured, of course, but if they can’t be cured hopefully you can lead a long life, and that life can be better when a patient and their doctor are working together. 

I’m Andrew Schorr.  Thank you for joining us.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of Northwestern Memorial Hospital, its medical staff 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 December 22, 2013