Staying Organized and Working With the Healthcare Team

stay organized with your multiple myeloma healthcare team

This article can help you understand how best to stay organized, work with the healthcare team, and help someone with MM at each stage of his or her journey.


  1. Staying organized and planning ahead for doctor visits can help make your responsibilities easier to manage
  2. You are an important part of the healthcare team

Staying Organized

Caregivers often play many roles; balancing doctor appointments, medication schedules, and household responsibilities can feel like a full-time job. Staying organized and planning ahead may help make things easier. Writing detailed notes and reminders in a notebook, planner, or calendar can help you keep track of all you need to do.

Attending medical visits will help support the person with MM and enable you to gain a full understanding of his or her treatment plan. To make the most of those visits, it’s helpful to plan ahead.

Here’s what you should bring to each visit:

  • Contact information for all physicians, specialists, and therapists on the person’s healthcare team
  • Insurance information and any financial issues
  • List of allergies
  • Notes on how the person with MM is feeling or changes in how he or she feels
  • Schedules of other appointments
  • List of other medicines, dosing schedule, and side effects
  • List of questions

Any time the appointment is with a new doctor or hospital, you should also bring previous records, test results, and a list of other medicines. Be sure to tell any new healthcare professional—including primary care doctors, dentists, and other specialists—that the person you’re caring for has MM. It may have an impact on other medical decisions.

Working With the Healthcare Team

Medical visits are a regular part of life for someone with MM. His or her healthcare team may involve many different people—doctors, nurses, physician assistants, nurse practitioners, social workers, and others. In fact, nurses are great sources of information and may be the people you have the closest relationships with at the doctor’s office.

As a caregiver, you are also an important part of the healthcare team. At times, the person with MM may be too overwhelmed to pay attention or grasp what the doctor is telling him or her. That’s where you can step in, by going to doctor visits, asking questions, and being his or her advocate.

Here are some questions you may want to ask when starting with a new healthcare practice:

  • When is the office open?
  • Who do you contact after office hours, or is there an emergency number?
  • When is the best time and what is the best way to contact the office (phone, fax, or e-mail)?
  • Who can you go to with questions when the doctor is not available?

Here are some tips to make sure you remember everything you need to do:

  • Write down questions before each visit. It may be helpful to prioritize them ahead of time. Some topics you might want to discuss openly with a doctor or nurse are:
    • The diagnosis of MM and the prognosis (or outlook) for the person for whom you’re caring
    • A new medication or changing medication and what to expect
    • Any changes in health
    • Possible side effects of medicines
    • Any concerns about new symptoms
    • The results of lab tests
  • Ask for more explanation. If you are unsure about something the doctor or nurse is saying, don’t be afraid to ask for more information or to have him or her explain it again.
  • Record the conversation. Ask your doctor if you can bring a recording device to each visit so that you can replay the healthcare team’s explanations later. Or you can bring a notebook in which to take notes.

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