When you first learn that you have CML, the news is often such a shock that you can’t even begin to think about the questions you need to ask. That typically comes later. You get home, turn on the computer and start searching the web for answers. The internet can be an essential resource, or your worst enemy in these situations. You may find what you want or more than you needed to know; good advice or wrong information; some practical tips or useful trivia.
After your initial diagnosis, it’s usually best to book an appointment with your hematologist soon afterward (within a week or two) so you can start getting answers to the many questions you’ll have.
To help you prepare for that appointment, here’s a list of 10 questions you may want to ask (in addition to your own):
- What phase of CML am I in? (either chronic, accelerated or blast-crisis) Most people have chronic-phase CML when they are diagnosed.
- How long will I live? Is CML always fatal?
- What tests will I need? How often do I need these tests? How much time should I book off work?
- What will these tests tell me?
- Before I start a medication, what am I trying to accomplish with treatment?
- What do these medications do?
- What are my medication options? What are the pros and cons of specific drugs? How do these drugs compare?
- What should I know about taking this medication? (e.g. how many times per day, can it be taken with food, will it interact with other medications I’m taking?)
- What side effects should I expect? How can I minimize them?
- What do I do if I have a bad reaction? Whom should I call? What is their contact number?
Once you’ve started taking a medication, there are some additional questions you may want to ask your doctor:
- How well am I responding to treatment? What is a log reduction and what is my log reduction number? (the goal is 3 or more as soon as possible)
- How will I know if my CML is progressing?
- Are there important symptoms (because of the disease or the medication) that I should be on the lookout for? If I notice something, whom should I call? How urgently?
- What if I don’t respond to the medication? Do I have other options?