What to ask your Doctor at Diagnosis - HealthTree for Multiple Myeloma
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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

What to ask your Doctor at Diagnosis (Myeloma Patient Panel)

Webinar
event Sep 20, 2022 / 01:00PM - 02:00PM EDT
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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
01:00 PM
Introduction
Audrey Burton-Bethke
Audrey introduces the agenda of the event and featured speakers Vicki, Mary, Tad and Maci.
Event panelist Vicki Jones, Tad Chance, Maci O'Grady, Mary Sage
01:35 PM
Presentation
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.
Event panelist Audience
01:35 PM
Questions and Answers
Audience
Type your questions in the chat and we will answer them!

Speakers & Moderators

The panelist Vicki Jones
Vicki Jones

In the 20 years since her diagnosis Vicki has learned a lot about fighting myeloma. In her own words, "When I was diagnosed it felt like I was the only one in the world with this disease. After always having been a bit of a loner, suddenly I yearned for someone to talk to that understood what I was going through. Now I want to be that someone for other myeloma patients and caregivers". Vicki has been on just about every chemo regimen and has had a stem cell transplant. Every drug regimen has worked against her Myeloma but she has never been in complete remission. She recently became a nonsecretor and is learning to deal with this new diagnosis. "When I was diagnosed in 2004 it made me sad to think I would never know what it was like to grow old. Now when I look in the mirror and see all the wrinkles, I’m overjoyed!"

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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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Join the Conversation

This event is part of the Newly Diagnosed group in HealthTree Connect, a social media platform for people with blood cancer. If you want to connect with other patients and caregivers and talk about this topic, join HealthTree Connect.

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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