John Rosengard

multiple myeloma coach since 2021

Diagnosed November 2017. Joined GRIFFIN Phase 2/3 clinical trial (D-RVd) then stem cell transplant in May 2018. Remission in May 2018. In January 2021, finished full 32 cycles of the GRIFFIN clinical trial. For post-GRIFFIN treatment, I elected to change from Revlimid (21 capsules/month) to Daratumumab (DARZALEX FASPRO, one injection per month) in April 2021. After good FISH and cloneSEQ results in May 2023, ended the dara maintenance to watch impact on blood numbers. Patient of Dr. Nina Shah (<May 2022), then Dr. Tom Martin at UCSF. Oakland, California. Blue Shield of CA is my insurer.

Steve DeVinney

multiple myeloma coach since 2024

Dismissing my fatigue and bone pain in 2021 as normal for an overworked 53 year old guy, I put off seeing a doctor until my coworkers cornered me and forced me to go to the ER. My kidneys were failing and I went off a cliff as soon as I was admitted to the hospital. They assigned a nephrologist. He wanted to treat the kidney injury first. Fortunately a family friend who is a hem-onc got me switched to Winship at Emory and enrolled in a clinical trial for patients with acute kidney injury. I went though 4 cycles of Dara-RVd, then a pause for kyphoplasty of my S1 vertebra, then Auto SCT in November 2021. I’ve been in remission since. Although Revlimid restricts my exercise intensity, I’ve been able to resume almost the same exercise regimen as before. I’ve been fortunate to be able to work throughout (except for a couple weeks at the beginning and during SCT).

Lou Sears

multiple myeloma coach since 2022

Before Mother’s Day, May 9, 2013, the last thing I was thinking about was being sick. The other Reading Specialist and I worked late after school to complete a special Mother’s Day activity for our Reading students for the next day. On the way home, I became very tired to the point that I didn’t think I could make it home and would have to call my husband to come and pick me up. When my husband David got home, he took my temperature. I was running a very high fever, and my husband immediately took me to the ER. I was diagnosed with double pneumonia. After five days in the hospital and lots of antibiotics and steroids, the doctor said I could go home, but in two weeks, I would need to have a blood test completed to see if I still had an elevated level of protein in my blood. My primary care doctor ordered blood tests and immediately referred me to a hematologist/oncologist. I was diagnosed with Stage III Multiple Myeloma. I started a fast track for a stem cell transplant, which was completed in November 2013. Since then, I have been in and out of remission and had various therapies, including a CAR-T and three clinical trials. I'm currently in my fourth clinical trial - an Allo CAR-T. I have a B.S. in Elementary Education, a Master’s in Reading, and an Education Specialist Degree in Reading. I was selected as a STARR Teacher for my state and was Past President of the Missouri State Reading Association. I recently retired after thirty-nine years in education. My husband, David, is also a retired educator, and we have two daughters and five grandchildren. I enjoy reading, crocheting, and crafting. David and I enjoyed traveling before the COVID outbreak, including Ireland, Scotland, Italy, and Switzerland. In October 2023, we visited London and Paris. We look forward to more adventures.