FAQ of Newly Diagnosed Patients: How To Become Empowered and Communicate With Your Healthcare Team Effectively
FAQ of Newly Diagnosed Patients: How To Become Empowered and Communicate With Your Healthcare Team Effectively image
May 20, 2021 / 01:00PM - 02:00PM EDT
Newly Diagnosed Myeloma Patients Chapter

Event Description

What questions should you be asking your doctor at diagnosis? What are the most important things to know and speak with your doctor about as a newly diagnosed myeloma patient? How can you become your own best advocate when communicating with your healthcare team? 

Ask a panel of veteran myeloma patients as well as medical professionals to prepare yourself to become a more empowered patient and communicate effectively. Don't miss this interactive Q&A session! 

This is a Google Meet. You do not need a Gmail Account to join. If you are joining using a tablet or phone, please make sure to download Google Meet from the App Store.

Schedule & Agenda

person
Introductions
01:00PM
Audrey Burton-Bethke
Audrey welcomes everyone, shares the event agenda, and introduces our featured speakers.
person
Interactive Q&A Session
01:05PM
Interact with a panel of veteran myeloma patients as well as medical professionals to become a more empowered patient and communicate effectively.

Speakers & Moderators

The panelist Audrey Burton-Bethke
Audrey Burton-Bethke

Audrey joined the Myeloma Crowd as the Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.

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The panelist Sheri Baker
Sheri Baker

In Oct. 2011, blood work showed my kidneys were failing. This led to the myeloma diagnosis at age 49. To say I was shocked would be an understatement. I began dialysis and myeloma treatment right away with Velcade and dex. I had my SCT in March 2012. Because of the kidney failure, I opted not to take Revlimid as maintenance (the only thing offered at that time). I stayed in a VGPR for 2 yrs. In Oct. 2013 my kidneys recovered just enough to stop dialysis. In April 2014 I had to begin treatment again. So I went with Velcade/dex because I tolerated it well. I was on Velcade for 6 yrs before my numbers started rising again. In July, 2020 I started Darzalex Faspro, Revlimid 10mg and Dex. I am now on monthly Dara/Rev 5mg and no dex. My kidney function is about 20%, still hanging in there. Over the years I began attending myeloma patient seminars/events. My husband and I love interacting with other patients/caregivers. I wanted to help others in my area, so in Sept. 2017 I began a myeloma support group in the Boise area. This has been such a great experience. We, as patients, share a common bond. The struggles are real, but we help each other, share experiences, and laugh a lot. When I was first diagnosed, the prognosis was 3-5 years. 7, if I was lucky. This October will be 10 yrs! My husband and 3 kids have given me support and motivated me to keep fighting. I have seen all 3 children graduate college, 1 get married and I have 2 beautiful grandsons. I look forward to many more years and hope that I can help others do the same!

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The panelist Robin Weaver
Robin Weaver

My MM was diagnosed in October 2017 when I had a fractured shoulder bone. Kyphoplasty was done on two places to shore up my vertebrae. My Stem Cell Transplant was in April 2018. I am in remission and on monthly chemo maintenance. Radiation treatment eliminated my rib pain and greatly reduced knee pain. My other health issues include obesity and Type 2 diabetes. With my husband, I am active with our local MM Support Group. We live in Bartlett, IL - about 30 miles west of Chicago. Our three children, all grown and married, are supportive. We have three grandchildren. Although retired from local government management, I am active in professional groups and am a Senior Advisor to those in active service. I love to travel. At age 63, I have a lot more living to do!

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The panelist Jim Lubinsky
Jim Lubinsky

Diagnosed June 2017 with smoldering myeloma, I expected to never see the active status. After completing a drug trial (daratumumab aka darzalex) in January 2018 for smoldering myeloma, my Mspike aka mono protein number dropped from 4 to 0.9 (4,000 to 900). During the summer of 2017, the MRI showed a growing lesion on the vertebrae at 7mm. It was time to admit "I had active myeloma" needing treatment. Having been convinced that day would never happen, agreeing to treatment was emotionally challenging. My autologous stem cell transplant in October 2017 resulted in a complete remission. Since February of 2018, I was on revlimid maintenance at 10mg to two years then 5 mg for one year. In late March 2021, the MRD test showed no myeloma and I stopped Revlimid treatment. The support from my spouse, Pat, and our 4 children, lifted my spirits when needed, giving me a renewed hope and expectation of living a long life (at diagnosis in 2015 I thought I would die soon). I truly enjoy helping other patients gain comfort in their trials, especially when facing the transition from smoldering to stem cell transplant. This is just another journey in life. I compare the journey to my sailing trips (my second passion in life). Some days we experience calm waters and light breezes and life is good. But only in strong winds and heavy seas do we learn who we are and what we're made of. Know that the storm will pass and you will move on.

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The panelist Arturo Hurtado
Arturo Hurtado

Arturo Hurtado is an International Medical Graduate who Joined HealthTree in 2020 as part of The Patient Experience team. He helps patients understand their disease panorama and navigate their myeloma through the tools and resources that HealthTree provides. He is an enthusiastic photographer, tech nerd, and aspiring food explorer who loves to travel and find new exciting experiences.

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The panelist Patricia Flores
Patricia Flores

Patricia is an International Medical Graduate who joined HealthTree in 2020 as part of the Patient Experience team. She helps patients understand and track their lab & genetic test results as well as relevant information from their health history. She loves ballet, traveling, and reading a good science fiction book as often as possible.

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Have Any Questions?

Thank you for your interest in the event. If you have any questions, we would love to help!

Feel free to give us a call or send us a message below.

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Get In Touch With Us

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+1 800 709 1113

email

Support@healthtree.org

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