| CML Prognosis And Guide To Treatment By Mark Juckett, MD Hematologist, Section of Hematology/BMT, University of Wisconsin, Madison, Wisconsin, USA |
This interview was
conducted by CML patient, Claudia on
April 24, 2006.
Claudia: Thank you, very much, Dr. Juckett, for taking a few minutes of your time to
talk about what physicians mean when they say prognosis and how a prognosis should be
used by CML
patients and their physicians. To start, would you please define “Prognosis”?
Dr. Juckett: When we discuss prognosis, what we are really trying to do is predict the
future that a patient may have with the disease. So, when a patient asks about their
prognosis, what they are asking is “Can you predict the future for me?” What is
important for patients to understand is when we think about prognosis, what physicians
know is how a group of people with the same disease will fare over time. This is
important information because it gives us arough idea of how people will survive with
their disease. However, the knowledge about how a group does is quite limited
in its ability to predict how a single person will survive. So while we can use the
information about a group to understand the future to an extent, we really aren’t very
good at predicting how an
individual will do. The information is best used as a guide to choose therapy.
Claudia: So, if someone says “I have CML. What is my prognosis? How long do I have”?
You can describe a group of patients, but individual outcome may be different?
Dr. Juckett: Yes, For a group of people, we have a rough idea how people will fare over
time, but for an individual our prediction is poor and many factors must be considered
such as
details about the disease, how patients tolerate the treatment, howwell the disease
responds, and even then we are often surprised. The disease does not always play by the
rules. So patients need to understand that I may be able to give them a rough idea how
long the disease will remain in remission based on a group of patients, but when it comes
to the individual, my prediction is an educated guess of sorts, and it is definitely not a
sentence.
Claudia: In your talk with the Leukemia Lymphoma Society’s Madison Lymphoma
Support Group on this topic, you talked about the median as being key to understanding
prognoses.
Can you tell us, what is the median and how it relates to prognosis?
Dr. Juckett: Let’s look at the issue; what happens when somebody asks for a prognosis
and the doctor gives them a time. Let’s say somebody has a particular disease and the
doctor says people survive for 5 years. What does that really mean? The value that
doctors use is something
called the median. The median described the survival of the “middle guy” in a group of
people with the same disease. If we take a group of people with a disease, let’s say toe
warts, and we line them up in order by how long they live with the toe warts, we may find
some people live for one year with their toe warts and others may live 20 years and a
whole lot of people are in between 1 year and 20 years. When we line them up from worse
case scenario to best case, and pick the person in the middle, that person is the median.
Strictly speaking, if a group of people have a median
survival of 5 years, ½ of the people survive longer than 5 years and; of course, ½ less
than 5 years. If you ask, what is the possibility that I will survive for 5 years? Well, if
you’re asking what the likelihood is of surviving 5 years exactly, the chance is pretty
little. But if you ask about the chance of surviving for longer than 5 years, then there is a
50% chance. That is what the median means. And that is very different than what I think
a lot of people will hear when physicians mistakenly say that somebody with a particular
disease “will survive 5 years”.
Claudia: So what you are saying is that some people will survive longer than the median
time and some not as long?
Dr. Juckett: That’s right. A patient may be shorter or longer than the median.
Claudia: How do you use survival or prognosis statistics then when working with an
individual patient?
Dr. Juckett: The most important use of the survival statistics really comes down to
choosing treatments. If we have a group of people who are treated one way and they have
a certain
median survival, and another group of people on a differenttreatment have a much
longer median survival, generally we want to choose the second treatment. The most
important way
to use the median is to choose treatments. Now, from a patient’s perspective, the median
survival can also help them understand how bad their disease can be. For example,
patients with a terrible disease such as metastatic lung cancer have a median survival of
about 6 months and very few are alive beyond a year. No matter how you interpret those
numbers, the clear message is that it is a bad disease. That is quite a bit different than
someone with a disease with a median
survival of 6 years. Exactly how long each might survive we don’t know. We do know
that the disease with the 6 month median is a bad disease since the group as a whole does
very
badly. I think just from the counseling perspective, median survival has some meaning,
at least in patients’ understanding just how serious the disease is. Yet again, trying to
predict how long the individual lives is fraught with a lot of error.
Claudia: Yes, I have a friend diagnosed with stage IV colon cancer who was told most
people survive between 6 months and 2 years. She is 3 years out and so far cancer free.
Dr. Juckett: That is Wonderful!
Claudia: I’m thrilled, too. And of course, so is she. She is continuing to live life fully and
enjoy each day.
Dr. Juckett: When talking about these medians, there is another thing that is important
to understand. Every day a patient gets up and they are feeling well and there is no
disease, or in the case of CML, a good remission status is kept, the chance of living
beyond the median time actually goes up. So it’s not like saying someone has 5 years and
they are counting the days down. The reality is that it is just the opposite, every day you
get up and are feeling well, you can add time to that number you might have heard at the
beginning. The probability of more time increases. Good news begets good news!
Claudia: I like that statement: Good news begets good news. A couple of minutes ago,
you talked about using prognosis statistics to help choose treatment plans. In the case of
CML,
what are some of the things that you look at to decide treatments for CML?
Dr. Juckett: Today, with Gleevec and other medicines that are coming out, it is
increasingly clear that Gleevec is the first place to start for almost everybody. It used to
be quite a bit more
difficult decision since the only real treatments we had were only moderately effective and
very toxic medical treatments or very toxic but very effective bone marrow transplant
treatments.
So those decisions were much tougher. Gleevec is very effective and much less toxic than
any of the other treatment options. Some of the indexes that we used to determine
prognosis are much less important and don’t necessarily change our recommendation of
starting with Gleevec, monitoring, and then moving on to other treatments if necessary.
It remains difficult to counsel somebody who is very young, who has early phase CML,
and a matched sibling bone marrow
donor, because we know those patients can do very well for long periods of time with
bone marrow transplant. But increasingly we are recommending Gleevec at least as a
first start for those patients, because if they respond very quickly and very well, it
appears that survival of those patients is quite good in the long run.
Claudia: We have a number of our group who are younger, by that I mean under 30, and
a fair number between 30 and 50. Some of them have gone through transplant and some
are looking
towards transplant. I know you work with transplant patients. Do you see many CML
patients going through transplant?
Dr. Juckett: It is less and less. It was the most common reason for transplantation using
donors, but since 2001, the numbers have fallen off quickly. My approach is to sit down
with people and
discuss both options, Gleevec versus transplant. Of course, they are not exclusive
options. Most people choose Gleevec and if it doesn’t work well, then go for transplant
which I think is pretty
reasonable. We do have good long-term data on transplantation, but we don’t have long-
term data on Gleevec, although the short-term data looks very good.
Claudia: I’d like to summarize a little bit. You are saying that no one can predict the
future for you, it depends on your individual situation and how you respond to
treatment. The prognosis is for groups, not individuals. Prognosis can be used to help
decide treatment plans. We as patients need to be open with our physicians and discuss
our feelings about our disease and
treatments. Is there anything that I haven’t asked that you’d like to mention?
Dr. Juckett: No. The only thing I’d like to emphasize is that over and over and over,
people will ask me about survival times and they carry a sense of a clock winding down. I
think it is
important to know that people who continue to do well are likely to continue to do well
and that patients should be counting up from day one. Good days tend to bring more
good days.
Claudia: Thank you, Dr. Juckett, for your time. You’ve helped us all understand the
prognosis statistics a little better.
conducted by CML patient, Claudia on
April 24, 2006.
Claudia: Thank you, very much, Dr. Juckett, for taking a few minutes of your time to
talk about what physicians mean when they say prognosis and how a prognosis should be
used by CML
patients and their physicians. To start, would you please define “Prognosis”?
Dr. Juckett: When we discuss prognosis, what we are really trying to do is predict the
future that a patient may have with the disease. So, when a patient asks about their
prognosis, what they are asking is “Can you predict the future for me?” What is
important for patients to understand is when we think about prognosis, what physicians
know is how a group of people with the same disease will fare over time. This is
important information because it gives us arough idea of how people will survive with
their disease. However, the knowledge about how a group does is quite limited
in its ability to predict how a single person will survive. So while we can use the
information about a group to understand the future to an extent, we really aren’t very
good at predicting how an
individual will do. The information is best used as a guide to choose therapy.
Claudia: So, if someone says “I have CML. What is my prognosis? How long do I have”?
You can describe a group of patients, but individual outcome may be different?
Dr. Juckett: Yes, For a group of people, we have a rough idea how people will fare over
time, but for an individual our prediction is poor and many factors must be considered
such as
details about the disease, how patients tolerate the treatment, howwell the disease
responds, and even then we are often surprised. The disease does not always play by the
rules. So patients need to understand that I may be able to give them a rough idea how
long the disease will remain in remission based on a group of patients, but when it comes
to the individual, my prediction is an educated guess of sorts, and it is definitely not a
sentence.
Claudia: In your talk with the Leukemia Lymphoma Society’s Madison Lymphoma
Support Group on this topic, you talked about the median as being key to understanding
prognoses.
Can you tell us, what is the median and how it relates to prognosis?
Dr. Juckett: Let’s look at the issue; what happens when somebody asks for a prognosis
and the doctor gives them a time. Let’s say somebody has a particular disease and the
doctor says people survive for 5 years. What does that really mean? The value that
doctors use is something
called the median. The median described the survival of the “middle guy” in a group of
people with the same disease. If we take a group of people with a disease, let’s say toe
warts, and we line them up in order by how long they live with the toe warts, we may find
some people live for one year with their toe warts and others may live 20 years and a
whole lot of people are in between 1 year and 20 years. When we line them up from worse
case scenario to best case, and pick the person in the middle, that person is the median.
Strictly speaking, if a group of people have a median
survival of 5 years, ½ of the people survive longer than 5 years and; of course, ½ less
than 5 years. If you ask, what is the possibility that I will survive for 5 years? Well, if
you’re asking what the likelihood is of surviving 5 years exactly, the chance is pretty
little. But if you ask about the chance of surviving for longer than 5 years, then there is a
50% chance. That is what the median means. And that is very different than what I think
a lot of people will hear when physicians mistakenly say that somebody with a particular
disease “will survive 5 years”.
Claudia: So what you are saying is that some people will survive longer than the median
time and some not as long?
Dr. Juckett: That’s right. A patient may be shorter or longer than the median.
Claudia: How do you use survival or prognosis statistics then when working with an
individual patient?
Dr. Juckett: The most important use of the survival statistics really comes down to
choosing treatments. If we have a group of people who are treated one way and they have
a certain
median survival, and another group of people on a differenttreatment have a much
longer median survival, generally we want to choose the second treatment. The most
important way
to use the median is to choose treatments. Now, from a patient’s perspective, the median
survival can also help them understand how bad their disease can be. For example,
patients with a terrible disease such as metastatic lung cancer have a median survival of
about 6 months and very few are alive beyond a year. No matter how you interpret those
numbers, the clear message is that it is a bad disease. That is quite a bit different than
someone with a disease with a median
survival of 6 years. Exactly how long each might survive we don’t know. We do know
that the disease with the 6 month median is a bad disease since the group as a whole does
very
badly. I think just from the counseling perspective, median survival has some meaning,
at least in patients’ understanding just how serious the disease is. Yet again, trying to
predict how long the individual lives is fraught with a lot of error.
Claudia: Yes, I have a friend diagnosed with stage IV colon cancer who was told most
people survive between 6 months and 2 years. She is 3 years out and so far cancer free.
Dr. Juckett: That is Wonderful!
Claudia: I’m thrilled, too. And of course, so is she. She is continuing to live life fully and
enjoy each day.
Dr. Juckett: When talking about these medians, there is another thing that is important
to understand. Every day a patient gets up and they are feeling well and there is no
disease, or in the case of CML, a good remission status is kept, the chance of living
beyond the median time actually goes up. So it’s not like saying someone has 5 years and
they are counting the days down. The reality is that it is just the opposite, every day you
get up and are feeling well, you can add time to that number you might have heard at the
beginning. The probability of more time increases. Good news begets good news!
Claudia: I like that statement: Good news begets good news. A couple of minutes ago,
you talked about using prognosis statistics to help choose treatment plans. In the case of
CML,
what are some of the things that you look at to decide treatments for CML?
Dr. Juckett: Today, with Gleevec and other medicines that are coming out, it is
increasingly clear that Gleevec is the first place to start for almost everybody. It used to
be quite a bit more
difficult decision since the only real treatments we had were only moderately effective and
very toxic medical treatments or very toxic but very effective bone marrow transplant
treatments.
So those decisions were much tougher. Gleevec is very effective and much less toxic than
any of the other treatment options. Some of the indexes that we used to determine
prognosis are much less important and don’t necessarily change our recommendation of
starting with Gleevec, monitoring, and then moving on to other treatments if necessary.
It remains difficult to counsel somebody who is very young, who has early phase CML,
and a matched sibling bone marrow
donor, because we know those patients can do very well for long periods of time with
bone marrow transplant. But increasingly we are recommending Gleevec at least as a
first start for those patients, because if they respond very quickly and very well, it
appears that survival of those patients is quite good in the long run.
Claudia: We have a number of our group who are younger, by that I mean under 30, and
a fair number between 30 and 50. Some of them have gone through transplant and some
are looking
towards transplant. I know you work with transplant patients. Do you see many CML
patients going through transplant?
Dr. Juckett: It is less and less. It was the most common reason for transplantation using
donors, but since 2001, the numbers have fallen off quickly. My approach is to sit down
with people and
discuss both options, Gleevec versus transplant. Of course, they are not exclusive
options. Most people choose Gleevec and if it doesn’t work well, then go for transplant
which I think is pretty
reasonable. We do have good long-term data on transplantation, but we don’t have long-
term data on Gleevec, although the short-term data looks very good.
Claudia: I’d like to summarize a little bit. You are saying that no one can predict the
future for you, it depends on your individual situation and how you respond to
treatment. The prognosis is for groups, not individuals. Prognosis can be used to help
decide treatment plans. We as patients need to be open with our physicians and discuss
our feelings about our disease and
treatments. Is there anything that I haven’t asked that you’d like to mention?
Dr. Juckett: No. The only thing I’d like to emphasize is that over and over and over,
people will ask me about survival times and they carry a sense of a clock winding down. I
think it is
important to know that people who continue to do well are likely to continue to do well
and that patients should be counting up from day one. Good days tend to bring more
good days.
Claudia: Thank you, Dr. Juckett, for your time. You’ve helped us all understand the
prognosis statistics a little better.