A Guide to Communicating with Your
Healthcare Team

Once you have established your healthcare team, it’s extremely important to keep the lines of communication open and candid. Below is a list of ongoing questions and topics to discuss with your healthcare team to get conversations started that will help you prepare for and manage various aspects of your treatment planning and disease management. 

My Myeloma

  • What is multiple myeloma?
  • What tests do I need to have done to learn more about my specific case of multiple myeloma?
  • How advanced is my disease?
  • What stage am I in?

My Treatment

  • Let’s establish the goals of my treatment and how best to reach those goals
  • What are the best treatment options for my specific situation?
  • What are the benefits of the treatment you are recommending?
  • What are these benefits based on (e.g., clinical trials, personal experience, etc.)?
  • Why are you recommending this treatment over other treatments?
  • What will happen if I choose NOT to go through treatment? Or delay?
  • What can I do to prepare for treatment?
  • What are the side effects of this treatment?
  • How long will this treatment last?
  • How long will it take to recover from treatment?
  • If I have this treatment, will it prevent me from receiving a different treatment later?

My Medical History

  • Any and all existing medical conditions you have, such as renal impairment, cardiovascular disease, diabetes, etc.
  • Drugs, vitamins, supplements, herbals you currently take.
  • Any allergies or illnesses.
  • Dietary and sleep habits.

My Prognosis

  • What are my chances for success?
  • Will my cancer come back?
  • What tests will be used to see if the cancer has returned?

Complications

  • What complications from my cancer might I have? What should I watch for?
  • How are these complications treated or minimized?
  • Is there any way to avoid these complications?

Costs

  • What out-of-pocket costs will I have for treatment? Drugs? Tests?
  • What clearances do I need to obtain from my insurance company?
  • May I be assigned an oncology social worker to help me understand the financial implications and help uncover financial resources?

 

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It’s also important to come prepared to appointments with your healthcare team so that you can make the most of your time with them. Following are a few suggestions for helpful information to share with your team.

Bring to Appointments with Your Healthcare Team:

  • Contact information for all physicians, specialists, therapists.
  • Insurance information.
  • Notes on your illness.
  • Appointment schedules.
  • Prescriptions, treatment and dosing schedule.
  • Supportive care or other medications.
  • Update on your daily condition.
  • A friend or caregiver to help take notes.
  • Complete medical history, including a list of any pre-existing medical conditions. Common conditions can include renal (kidney) disease and cardiovascular disease.

Things to Report to Your Healthcare Team:

  • How you are feeling.
  • Any new side effects.
  • Changes in current medications (including vitamins, supplements, herbals).
  • Changes in dietary or sleep habits.
  • Allergies or illnesses.
  • Worsening of existing conditions.
  • Financial pressures that might prevent you from filling prescriptions or complying with your doctor’s recommendations.

BRENDA
Diagnosed with Multiple Myeloma

Brenda, on the importance of knowing all the players on your healthcare team.

 

 


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STEVE
Caregiver

Steve, on how he helped hand-pick a healthcare team for his mother.

 

 


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WHO IS ON YOUR TEAM?

Nurses like:
Krista Tucker
Nurse and Educator

 
 
 
 

 

Letter from Nurse Krista Tucker

Myeloma Educator

I'm Krista Tucker, and I have been working as a nurse with myeloma patients for more than 20 years. As a multiple myeloma expert, I've learned that many patients don't have multiple myeloma symptoms until their disease has reached an advanced stage, so you may be entering this conversation with a prognosis that seems very intimidating.

I know the journey won't be easy. But sooner rather than later it's worth the effort to "Take Your Best Shot" -- to take charge of your disease by increasing your understanding of your multiple myeloma, surrounding yourself with people who can help and support you, and educating yourself on treatment options, right down to the financial aspects, so that you and your healthcare team can form a treatment plan that's right for you.

I've cared for many wonderful people with multiple myeloma, and I've seen many different approaches to dealing with their disease. I know how tough it can get, but it pays to stay positive! It's a journey that demands your energy, engagement and determination. You've got to take charge and stay involved in your care.

You need to line up the best team possible to guide you through this journey! Choose your healthcare team and support your diagnosis. Then work through the details with your oncologist about what is right for you, and know that it's okay to get a second opinion when you have questions about treatment decisions.

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When Phil and I were dating we lightheartedly called ourselves "Team P&C" to represent our loyalty and support for one another. Deciding at diagnosis that we would continue to operate as a cohesive unit, Phil and I relied on each other as teammates and used faith, humor and open communication to navigate Phil's health challenges. Always willing to go to bat for one another or to pick up slack if necessary, we know what it means to make sacrifices and see things through.

Phil has a positive attitude and natural charisma which are a perfect match for my practical approach to life. Phil's genuine love of people and my strong empathy for both patients and caregivers inspired us to connect with the myeloma community in as many meaningful ways as possible.

 
 

 

 

 

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