Living with Leukemia - About Treatment Issues in Chronic Myelogenous Leukemia

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Living with Leukemia

About Treatment Issues in Chronic Myelogenous Leukemia

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The following is a list of questions to ask your doctor About Treatment Issues in Chronic Myelogenous Leukemia as well as tips for preparing for these conversations.

How will I know the right treatment for me?

Treatment decisions are made based on your age, your CML phase (chronic, accelerated or blast), and your general health. Until recently, chemotherapy and interferon were the only options for people with CML. But the discovery that the Philadelphia chromosome, which is a genetic abnormality in blood cells, causes CML has led to a new generation of treatment options, most notably the targeted therapy Gleevec. Today, most people will begin treatment with Gleevec, which has become the current standard of care. Other options include chemotherapy, including high-dose chemotherapy with stem cell transplant, interferon and targeted therapy with Gleevec in combination with other drugs.

Is high dose chemotherapy followed by stem cell transplantation a viable treatment option?

One type of treatment requires high doses of chemotherapy to wipe out all the cells in the bone marrow, including all the healthy stem cells and leukemia cells. Stem cells acquired from people who act as donors are then infused back into the bloodstream of the person with CML to replace the ones destroyed during treatment. While stem cell transplantation is the only curative form of CML treatment, it carries serious risks and can be life threatening. Possible problems can include serious infections and graft-versus-host disease (GVHD). GVHD occurs when the immune system reacts to transplanted cells. Stem cell transplantation is only recommended for certain people, and is most successful in younger patients.

How will I know my treatment is working?

You will receive follow-up tests during therapy to monitor how well your treatment is working. You may have hematologic tests, which are blood tests that measure the number of white blood cells, red blood cells and platelets you have in your bloodstream. A hematological response means that the numbers of normal blood cells are within normal range. Doctors will also conduct cytogenetic tests to count the number of cells that have the Philadelphia chromosome, the genetic mutation responsible for the production of leukemia cells. A cytogenetic response means that the number of abnormal cells containing the Philadelphia chromosome has been reduced.

More sensitive cytogenetic tests include the fluorescence in situ hybridization (FISH) test, which can detect one leukemia cell in 100 -2000 cells, and the polymerase chain reaction (PCR) test, which can detect one leukemia cell in one million cells. Generally, if a FISH test is negative, the more sensitive PCR test will be conducted. If a PCR test is negative, the disease is said to be in molecular remission.

How will I know my treatment is not working?

Gleevec is very effective for the majority of people with CML, but it doesn’t work in everyone. Sometimes abnormal white cells rebound after having been controlled for a period of time. Doctors suspect that some people can become resistant to the medication or that somehow the gene mutation changes. This finding might mean a new treatment strategy is required.

What can be done if my treatment is not working?

If the initial treatment is not working, you doctor will likely need to change your treatment plan. This can be achieved by increasing the dose of your current treatment, using a combination of therapies, or reconsidering high-dose chemotherapy followed by stem cell transplantation, or a mini-transplant procedure. Another option is to enroll in a program that tests new drugs, known as a clinical trial.

How you can prepare for this discussion

Ask a family member or friend to attend doctors' appointments to take notes
Think about your goals for treatment
Familiarize yourself with various treatment options
If you are considering high-dose chemotherapy with stem cell transplantation, ask siblings about their willingness to be tested as stem cell donors
Collect medical records and make a detailed list of all of your medical conditions and their treatments; keep these in a binder for reference
Make a list of all the medications, herbal remedies and vitamin supplements you are taking and their dosage
List any past complications and reactions to medication
Keep a record of the dates and results of all follow-up tests
Keep a list of any changes you experience while on medication
Talk to your doctor about other treatment options if treatment is not working, or if your response changes
isit the clinical trials section of The Leukemia and Lymphoma Society's

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