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

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!"

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.

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.

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.