Living well

You will undoubtedly experience a range of emotions beginning with the diagnosis and continuing through your treatment. If you are having difficulty dealing with your emotions, take a few minutes to think about your biggest concern. Are you worried about your prognosis or are your fears related to the changes in your life? Think about what is causing you distress and discuss it with your doctor. Your doctor can help you find the support you need either through a patient support group, like the CML Society, or through professional help. Here are a few questions to think about:

• Are you coping well? Do you feel melancholy?
• Are you feeling anxious?
• Are you feeling depressed?
• Do you still enjoy looking forward to things from which you used to find enjoyment?
• How are your family and loved ones handling you and the news of the disease?
• Do you feel supported?

This self assessment tool has been devised by the fellow patient members of the Patient Advisory Board of the CML Society of Canada. The goal of the assesment guide is to help you review and assess key indicators to measure your quality of life. You can combine it with the use of the E-Diary.

We hope you find it useful in helping you to think about any particular side effect you may want to talk to your Doctor about.

We would like to point out, that while most patients do have some type of side effect we cannot conlude that they are particularly due to the treatment or even the disease itself.

You should review the self assessment guide before your next visit with your Doctor. Remember to take notes and follow up on any advice your Doctor may provide you to help you manage your side effects.

Questions to ask your doctor

It is always helpful to have someone accompany you to help you take notes and serve as your memory after the visit.

If this is your first visit after being diagnosed and you have not started treatment yet, here are a few questions you might want to ask your doctor:

• What are the results of the bone marrow biopsy and what is the stage of the disease? (Most patients are diagnosed in a chronic phase)
• What treatment will I start? (Most patients will be started on Gleevec, also referred to as imatinib mesylate, at around 400mg per day. If your doctor is prescribing a different dose, do you understand why?)
• What does this drug do and how will its effectiveness be monitored?
• What if I miss a dose?
• What are some of the side effects that I might expect with this drug and what can I do to minimize them?
• Are there any side effects for which I should seek immediate medical attention?
• How do I buy this drug and will I need help with my insurance provider?
• Can I still have an occasional glass of wine or other alcohol while I am on this drug?
• Are there any other drugs that would interact with this drug?
• Is there a clinical trial for a new drug for newly diagnosed patients? If so, what would be the pros and cons of participating in a clinical trial?
• Do I need to be concerned about pregnancy, breast feeding or sterility?
• Will I be able to go to work? Is there anything specific I shouldn’t do while I am taking this drug?

After your first visit, make sure you make arrangements for your next visit before leaving the hospital.

To take these questions with you Download PDF

If this is a visit after you have already started treatment, take the time to review your diary, if you are keeping one, and make note of any specific thoughts or concerns to share with your doctor. Review your last test results and ask yourself if there is anything that you do not understand. If you are experiencing side effects remember that you do not have to suffer needlessly. In most cases your doctor will be able to help you. Try to think about what information you might need to help you better understand this disease.

Here are some general questions you might want to ask if they apply to you:

• I have been feeling fatigued but my hemoglobin (Hgb) levels are normal. What else could be causing the fatigue?
• I noticed my hemoglobin (Hgb) and hematocrit (HCT) levels are below the normal range. Could this be why I am feeling fatigued?
• I have been experiencing diarrhea. What can I do to ease this situation?
• What can I do to alleviate the nausea I have been feeling when I take my pills?
• Why am I experiencing a tingling sensation in my hands/arms/legs/feet?

To take these questions with you Download PDF