ANNOUNCER: Chronic myeloid leukemia or CML is a form of cancer that many patients initially don't even know they have. Often found during a routine blood test, CML is a disease in which too many white blood cells are made in the bone marrow. For a patient with CML, establishing a close relationship with their doctor is very important. Right from the start, a patient should make sure they understand all they can about the disease.
RICHARD STONE, MD: There are three major phases of CML. There is the chronic phase, which is the way most people present. There is the accelerated phase, which occurs when patients get a bit sicker. There is the blast crisis phase which is a fairly advanced phase. They need to know what phase they're in. They should know their blood counts, their chromosome status. They should be able to communicate to the doctor everything about how they feel.
JUDY OREM: I think patients and doctors would work better together if the patients understand what they have, they know what questions to ask, if they form a relationship with their doctor that is such that says I want to know these things when I ask them. I would like these answers.
ANNOUNCER: The first answer many patients want, concerns their treatment options. It's a decision they should discuss thoroughly with their doctor. The choices for CML range from using drugs or radiation to kill cancerous cells, to bone marrow transplants, currently the only known cure.
RICHARD STONE, MD: Patients and physicians should decide upon a course of treatment after careful discussion of all the treatment options. Every patient has a different style for decision-making. Some patients like to leave everything in the hands of their physician. Others want to take control and want to read the literature themselves and be an equal partner with their physician. Every single style is acceptable and has to be done. The exact means of deciding on the treatment options really depend on the patient him or herself.
STEPHEN O'BRIEN, MD, PhD: I think doctors should be aware of the latest data. They should trawl the Internet as their patients will do. Keep up to date with meetings and literature so that they have really very accurate and up-to-date information, particularly on drug therapy, and also on newer forms of bone marrow transplantation because it's a constantly shifting field.
ANNOUNCER: Some patients with CML feel they must take the lead in treating their own disease.
JUDY OREM: When you go to see your doctor you really have to be your own advocate. Make sure that the questions, the things you think are important get covered by your doctor. I hear patients say "well whatever my doctor wants I'll do" and I'm going, you need to know what you need.
GEORGE DARR: I also think that a patient needs to do his or her homework so you come to these visits with some informed ideas about what you need to know and can make the best use of the medical professional's time.
ANNOUNCER: Once treatment starts, patients play a key role in monitoring their condition.
STEPHEN O'BRIEN, MD, PhD: They should report back any side effects that may or may not be of major significance. But they should report things back to their physician.
RICHARD STONE, MD: If they know exactly what their symptoms are, if they keep a diary of when they take their medicine. If they write down their symptoms when they have them so they can remember them, that would be great. But if they can't do that, that's okay too because we can ask them those questions and find out.
ANNOUNCER: During treatment, doctors will test for two things, the cytogenetic response or how the bone marrow cells are responding to treatment, and the hematological response, the blood count.
RICHARD STONE, MD: That means your blood counts have been normalized. Your bone marrow looks pretty good under the microscope. The next most deep response would be a cytogenetic response. That's when your Philadelphia chromosome containing cells in your bone marrow goes down. If it goes down to a situation where less than 35% of the cells have the Philadelphia chromosome, that's a major response.
ANNOUNCER: Doctors should make sure their patients understand these tests, how often they are done, what they measure, and what the specific results mean.
STEPHEN O'BRIEN, MD, PhD: I'm not particularly interested in blood counts monitoring although of course it's useful and important to have a normal blood count. Many of the drugs we use in chronic myeloid leukemia can produce that. We know from years of experience that a normal blood count doesn't necessarily indicate disease won't progress in due course. It doesn't alter the natural history of the disease. Whereas cytogenetic response based on a bone marrow aspirate every six months is important and we know from historical experience again that better cytogenetic results equate to better survival in the long term.
ANNOUNCER: Among the drug therapies currently available, Gleevec is being hailed by many health professionals, as a new breakthrough.
STEPHEN O'BRIEN, MD, PhD: For the last 15 years the drug of choice was interferon therapy which is quite a difficult therapy to take, in that one has to inject oneself everyday, much as a diabetic would. And the side effects for the drug are really quite frequent and quite troublesome. More recently, in the last four years, we've been seeing very exciting developments with imatinib, with Gleevec therapy for CML which is a very much more targeted and specific therapy for the molecular abnormality in this disease.
RICHARD STONE, MD: Gleevec which is relatively risk-free. The side effects are minimal. There are some side effects but very few patients in the clinical trials have had to stop the drugs because of side effects. And the response rate is very high.
DAVID SAVAGE, MD: This is a disease that is very treatable and even curable. If a cure is not feasible, still there is interferon which can prolong survival and Gleevec which certainly seems to be a very potent agent.
RICHARD STONE, MD: There are three major phases of CML. There is the chronic phase, which is the way most people present. There is the accelerated phase, which occurs when patients get a bit sicker. There is the blast crisis phase which is a fairly advanced phase. They need to know what phase they're in. They should know their blood counts, their chromosome status. They should be able to communicate to the doctor everything about how they feel.
JUDY OREM: I think patients and doctors would work better together if the patients understand what they have, they know what questions to ask, if they form a relationship with their doctor that is such that says I want to know these things when I ask them. I would like these answers.
ANNOUNCER: The first answer many patients want, concerns their treatment options. It's a decision they should discuss thoroughly with their doctor. The choices for CML range from using drugs or radiation to kill cancerous cells, to bone marrow transplants, currently the only known cure.
RICHARD STONE, MD: Patients and physicians should decide upon a course of treatment after careful discussion of all the treatment options. Every patient has a different style for decision-making. Some patients like to leave everything in the hands of their physician. Others want to take control and want to read the literature themselves and be an equal partner with their physician. Every single style is acceptable and has to be done. The exact means of deciding on the treatment options really depend on the patient him or herself.
STEPHEN O'BRIEN, MD, PhD: I think doctors should be aware of the latest data. They should trawl the Internet as their patients will do. Keep up to date with meetings and literature so that they have really very accurate and up-to-date information, particularly on drug therapy, and also on newer forms of bone marrow transplantation because it's a constantly shifting field.
ANNOUNCER: Some patients with CML feel they must take the lead in treating their own disease.
JUDY OREM: When you go to see your doctor you really have to be your own advocate. Make sure that the questions, the things you think are important get covered by your doctor. I hear patients say "well whatever my doctor wants I'll do" and I'm going, you need to know what you need.
GEORGE DARR: I also think that a patient needs to do his or her homework so you come to these visits with some informed ideas about what you need to know and can make the best use of the medical professional's time.
ANNOUNCER: Once treatment starts, patients play a key role in monitoring their condition.
STEPHEN O'BRIEN, MD, PhD: They should report back any side effects that may or may not be of major significance. But they should report things back to their physician.
RICHARD STONE, MD: If they know exactly what their symptoms are, if they keep a diary of when they take their medicine. If they write down their symptoms when they have them so they can remember them, that would be great. But if they can't do that, that's okay too because we can ask them those questions and find out.
ANNOUNCER: During treatment, doctors will test for two things, the cytogenetic response or how the bone marrow cells are responding to treatment, and the hematological response, the blood count.
RICHARD STONE, MD: That means your blood counts have been normalized. Your bone marrow looks pretty good under the microscope. The next most deep response would be a cytogenetic response. That's when your Philadelphia chromosome containing cells in your bone marrow goes down. If it goes down to a situation where less than 35% of the cells have the Philadelphia chromosome, that's a major response.
ANNOUNCER: Doctors should make sure their patients understand these tests, how often they are done, what they measure, and what the specific results mean.
STEPHEN O'BRIEN, MD, PhD: I'm not particularly interested in blood counts monitoring although of course it's useful and important to have a normal blood count. Many of the drugs we use in chronic myeloid leukemia can produce that. We know from years of experience that a normal blood count doesn't necessarily indicate disease won't progress in due course. It doesn't alter the natural history of the disease. Whereas cytogenetic response based on a bone marrow aspirate every six months is important and we know from historical experience again that better cytogenetic results equate to better survival in the long term.
ANNOUNCER: Among the drug therapies currently available, Gleevec is being hailed by many health professionals, as a new breakthrough.
STEPHEN O'BRIEN, MD, PhD: For the last 15 years the drug of choice was interferon therapy which is quite a difficult therapy to take, in that one has to inject oneself everyday, much as a diabetic would. And the side effects for the drug are really quite frequent and quite troublesome. More recently, in the last four years, we've been seeing very exciting developments with imatinib, with Gleevec therapy for CML which is a very much more targeted and specific therapy for the molecular abnormality in this disease.
RICHARD STONE, MD: Gleevec which is relatively risk-free. The side effects are minimal. There are some side effects but very few patients in the clinical trials have had to stop the drugs because of side effects. And the response rate is very high.
DAVID SAVAGE, MD: This is a disease that is very treatable and even curable. If a cure is not feasible, still there is interferon which can prolong survival and Gleevec which certainly seems to be a very potent agent.