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What to ask your Doctor at Diagnosis (Myeloma Patient Panel)
What to ask your Doctor at Diagnosis (Myeloma Patient Panel) image
Newly Diagnosed Myeloma Chapter
event Sep 20, 2022 / 01:00PM - 02:00PM EDT

Event Description

You hear the words "you have multiple myeloma" and are still trying to figure out what that means when it hits you- your life has changed. In the subsequent meetings with your doctor, there are critical questions to ask that could determine the rest of your treatment and the quality of your life. Hear from our patient panel what questions they are glad that they asked, and what they wish they would have asked their doctor if they could do it all again.

Schedule & Agenda

The panelist Audrey Burton-Bethke
Introduction
01:00PM
Audrey Burton-Bethke
Audrey introduces the agenda of the event and featured speakers Vicki, Mary, Tad and Maci.
person
Presentation
01:35PM
Vicki Jones, Tad Chance, Maci O'Grady, Mary Sage
They will talk about they are glad that they asked, and what they wish they would have asked their doctor if they could do it all again.
person
Questions and Answers
01:35PM
Audience
Type your questions in the chat and we will answer them!

Speakers & Moderators

The panelist Vicki Jones
Vicki Jones

Vicki has been fighting Myeloma since 2004 when she was diagnosed with stage 2 Myeloma and began aggressive chemotherapy. After a stem cell transplant in 2007 from which she obtained a very good partial response, Vicki has been on just about every drug regimen available. Every drug has worked well but, of course, nothing works forever. Recently after being IGA lambda for over 17 years, Vicki became a non-secretor and now leads Healthtree’s non secretory community group. Throughout her myeloma journey, Vicki has gratefully maintained an excellent quality of life and now finds joy in helping others diagnosed with Myeloma.

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The panelist Mary Sage
Mary Sage

Mary Sage lives with her husband Michael (who is also a MM Caregiver Coach), her adult son Raymond who is also one of her caregivers, and 2 dogs (Stella and Jake). She has lived in the Pacific Northwest region since 1986. She was diagnosed with Stage 2 IgG Lambda, standard risk in November 2015 and placed on immediate disability due to several spinal fractures and compressions, severe pain and limited mobility. Like many others, prior to diagnosis, she experienced years of bizarre blood results and chronic back pain that was becoming increasingly debilitating. Mary had a stem cell harvest in 2016 and a stem cell transplant (SCT) in 2019. Currently, her bloodwork shows standard risk MM; her MRD is positive with 5 parts per million. Since 2015 she has had 2 relapses and has become refractory to 2 treatments. Presently, her maintenance treatment, since May 2022, is KPd (Kyprolis, Pom and Dex) at 3 weeks on and 1 week off. Mary is in a good response with this treatment and hopes to be able to hold these results for a long time. Her pain is managed by a dedicated pain team who work closely with her to maintain quality of life.

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The panelist Tad and Maci Chance
Tad and Maci Chance

Tad was diagnosed with Stage 2 IgG Kappa Multiple Myeloma in August 2021 at the age of 47. Tad underwent 3 1/2 rounds of induction therapy (cut short by Velcade induced neuropathy) and a Stem Cell Transplant in December 2021. Maci dove head first into the role of caregiver, educating herself, organizing medical records, and acted as an advocate for Tad's care. In March of 2022 Tad achieved Very Good Partial Remission. Between us we have 5 children ages ranging from 16 to 21. We maintained a grounded approach to supporting them through the diagnosis and treatment. We continue to learn and grow as we adjust to life with Multiple Myeloma and continue on this entire journey with informed optimism. We have faced hard things, we will continue to face them, but we intend to find gratitude and presence along the way. We would love to support others on their journey with Multiple Myeloma.

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The panelist Audrey Burton-Bethke
Audrey Burton-Bethke

Audrey joined the HealthTree Foundation as the Myeloma Community Program Director in 2020. While not knowing much about myeloma at the start, she has since worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.

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Have Any Questions?

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