Top Tips and Questions
As you navigate your journey from diagnosis through treatment, it is important for you and your loved ones to be able to communicate with your doctor about any symptoms, concerns or questions you have. Remember, the more you share, the more your doctor will be able to help you.
Consider using the discussion guide below before and during appointments with your doctor. You can print it out and keep it with you as a reminder to address your questions and take notes about anything discussed during your appointment.
Not all questions will be relevant for all appointments, so remember to revisit this printout often and keep it updated from appointment to appointment.
Write down a list of thoughts and questions that have arisen since your last appointment.
Keep a journal or notebook with a list of feelings and emotions, as well as any general concerns you are having, to share with your provider at your next appointment.
If your insurance has changed, remember to bring your updated information and insurance card to your appointment.
Prepare a list of questions about your doctor’s practice that will support future discussions with your insurance company, if you’ve had coverage delays, claim denials, etc.
Compile any relevant test results from other healthcare professionals you may be seeing (e.g., cardiologist, eye doctor, dentist, primary care doctor, etc.)
Determine travel arrangements to and from your appointment and consider inviting a loved one to accompany you for support and to take notes.
Based on the distance of your doctor’s office and the duration of your appointment, consider bringing any necessary medication with you that you may need to take during a specific timeframe.
Bring this discussion guide, a notebook and a pen to write down notes from your conversation.
It can be difficult to recall every detail of your conversation with the doctor. Ask in advance for permission to record your conversation with the doctor on a smartphone. Be prepared in
advance to set this up with your smartphone.
| What advice do you have for coping with an sAML diagnosis? | |
|---|---|
| How do I tell my loved ones about my sAML diagnosis? | |
| What caused the sAML? How can you be sure about my diagnosis? | |
| What factors determine treatment options for sAML? | |
| Do I need any other tests before we decide on treatment? | |
| How do you recommend treating my sAML? | |
| What is the goal of my treatment? | |
| Can you tell me more about my treatment regimen (start date, administration details, dosing schedule/frequency, etc.)? | |
| How will you know if the treatment is working? What tests will you do, and how often? | |
| What are my options if the treatment isn’t working? | |
| How often and for how long should I expect to come for visits or testing, once I begin treatment? Are there any tests that can be completed closer to my home? | |
| Are there any other specialists you recommend seeing to supplement my treatment? | |
| What side effects should I expect? What can I do to cope with or reduce these side effects? | |
| Are clinical trials an option for me? | |
| Could I be a candidate for a bone marrow or stem cell transplant? | |
| How will treatment impact my daily life? | |
| Are there any lifestyle changes I can make? | |
| Do you know of any local support groups or resources for sAML patients? |
You may think of new questions or concerns following your appointment with your doctor. Be sure to write these thoughts down in a journal or in your notes so you can remember to address them during your next appointment.
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