Multiple Myeloma Stories
Plus Newest Treatment Updates
Explore below for in-depth multiple myeloma stories from our patients who share everything from first symptoms to navigating life with cancer.
Also read our in-depth interviews with experienced myeloma experts who talk about the newest treatment for multiple myeloma.
Our Featured Story
Hip-Hop, Hope, and Health: Oya Gilbert’s Multiple Myeloma Story
Oya Gilbert had always been full of energy. A father, a hip-hop lover, and a man who rarely got sick. But in 2015, his body started sending him signals he couldn’t ignore. But for two years, doctors dismissed his symptoms as anxiety. Watch Oya’s story from misdiagnosis to myeloma advocacy.
Stories by Type
Explore our multiple myeloma stories below, where patients describe things like:
- First myeloma symptoms
- What treatments they underwent
- Living with multiple myeloma
Active myeloma
Clay D., Relapsed/Refractory Multiple Myeloma
Symptoms: Persistent kidney issues, nausea
Treatments: Chemotherapy (CyBorD, KRd, VDPace), radiation, stem cell transplant (autologous & allogeneic), targeted therapy (daratumumab), immunotherapy (elotuzumab)
...
Melissa V., Multiple Myeloma, Stage 3
Symptoms: Frequent infections
Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
...
Elise D., Refractory Multiple Myeloma
Symptoms: Lower back pain, fractured sacrum
Treatments: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P., Multiple Myeloma, Stage 3
Symptoms: Dizziness, confusion, fatigue, vomiting, hives
Treatments: Chemotherapy (bortezomib & velcade), daratumumab/Darzalex, lenalidomide, revlimid, & stem cell transplant
...
Ray H., Multiple Myeloma, Stage 3
Symptoms: Hemorrhoids, low red blood cell count
Treatments: Immunotherapy, chemotherapy, stem cell transplant
...
Typical myeloma
The majority of people diagnosed with myeloma fall under this category:
- IgG k (kappa)
- IgG λ (lambda)
- IgA k (kappa)
- IgA λ (lambda)
Tim H., Multiple Myeloma
Symptoms: None that could be identified; cancer found through CT scan for gallbladder removal
Treatments: Chemotherapy, stem cell transplant
Scott C., Refractory Multiple Myeloma, Stage 3
Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatments: Clinical trial, chemo, kyphoplasty, stem cell transplant
Jude A., Multiple Myeloma, Stage 3
Symptoms: Pain in back, hips and ribs; difficulty walking
Treatments: Bilateral femoral osteotomy, reversal due to infection; chemotherapy
Light chain myeloma
It’s estimated that light chain myeloma makes up about 15% of all myeloma diagnoses. There are times when malignant plasma cells produce only the light chain component of the antibody. Patients diagnosed with these cases have what’s known as “light chain myeloma.”
Carlos C.
Diagnosis: Multiple myeloma, Light Chain, Stage 2
1st Symptoms: Back pain and spasms
Treatment: Back surgery to fuse T1 and T2, chemotherapy (RVD) and stem cell transplant
Non-secretory myeloma
Beth A.
Diagnosis: Multiple myeloma, relapsed/refractory
Subtype: Non-secretory (1-5% of myelomas)
1st Symptoms: Extreme pain between shoulder blades, sternum, head, burning sensation
1st Line Treatment: VAD chemo, radiation, stem cell transplant
RR Treatment: 8 chemo regimens, successful combo→selinexor+bortezomib+dexamethasone
Inactive myeloma
Smoldering myeloma
Maui B., Smoldering Myeloma
Symptoms: Inflammatory eye disease, uterine bleeding
Treatment: Watch and wait; routine biopsies ands scans
...
Brad H., Smoldering High-Risk Multiple Myeloma
Symptoms: Abnormal kidney function (stage 2 kidney disease), mild anemia
Treatments: To be started at the time of interview
...
Yolanda B., Multiple Myeloma
Symptoms: Anemia, unusual craving for starchy food, ‘clicking’ sound produced by knees under certain circumstances (such as when walking up stairs)
Treatments: Radiation, chemotherapy, targeted therapy
...
Stories by Treatment
1st line treatment
Michelle C., Multiple Myeloma
Initial Symptoms: Back pain, sinus infections, painful and itchy scabs, stomach pains, weight loss
Treatment: First line treatment, stem cell therapy
Melissa V., Multiple Myeloma, Stage 3
Symptoms: Frequent infections
Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
Jude A., Multiple Myeloma, Stage 3
Symptoms: Pain in back, hips and ribs; difficulty walking
Treatments: Bilateral femoral osteotomy, reversal due to infection; chemotherapy
Relapsed/refractory treatment
Michele J., Relapsed/Refractory Multiple Myeloma
Symptoms: Fatigue, anemia, persistent lower back pain, sharp leg pain during movement
Treatments: Surgery, chemotherapy, stem cell transplant
Theresa T., Relapsed/Refractory Multiple Myeloma, IgG kappa Light Chain
Symptom: Extreme pain in right hip
Treatments: Chemotherapy, CAR T-cell therapy, stem cell transplant, radiation
Laura E., Multiple Myeloma, IgG kappa
Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
Donna K., Refractory Multiple Myeloma
Symptom: None; found through blood tests
Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
Connie H., Relapsed/Refractory Multiple Myeloma
Symptom: Chronic bone pain
Treatments: Chemotherapy, CAR T-cell therapy
Multiple Myeloma Basics
“Multiple myeloma belongs to the group of diseases we think about when we think about blood cancers. Specifically, myeloma is a form of adult bone marrow cancer that comes about when plasma cells convert into malignant cells,” says Dr. Rafael Fonseca of Mayo Clinic.
Learn more about multiple myeloma
Multiple Myeloma Specialist Interviews
Hear directly from experienced myeloma oncologists and specialists. They talk about multiple myeloma in layman’s terms, describe the latest myeloma treatments, and what patients should be asking their doctors.
Dr. Blue on Improving Myeloma Care for Black Patients
Dr. Brandon Blue knew at a young age that he wanted to help people. Decades later, he’s done that and so much more, changing and saving the lives of people who’ve been diagnosed with cancer. Dr. Blue shares key strategies for better health care and saving lives, especially in Black communities impacted by multiple myeloma.
The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma
In this conversation, patient advocate Jack Aiello speaks with Dr. Alfred Garfall, a hematologist at Penn Medicine.
They discuss the advancement of immunotherapy for multiple myeloma, the difference between CAR T-cell therapy & bispecific antibodies, and the role of bispecifics in the myeloma toolkit of immunotherapies.
Newest Treatment for Multiple Myeloma
Top myeloma specialist, Dr. Rafael Fonseca of Mayo Clinic, sits down with The Patient Story for a deep dive into the landscape of treatment for multiple myeloma, from first line treatment to relapsed/refractory treatment, emerging T-cell therapies, and the importance of clinical trials.
Research on Black Myeloma Patients, Access & Disparities
Patient advocate Valarie Traynham and Dr. Shakira Grant discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.
Dr. Brandon Blue
Dr. Brandon Blue shares key strategies for better health care and saving lives, especially in communities impacted by multiple myeloma.
Irene Ghobrial, MD
Role: Clinical investigator and professor of hematological oncology
Focus: Multiple myeloma, Waldenström’s Macroglobulinemia, early screening, clinical trials
Provider:Dana-Farber Cancer Institute (Boston)
James Berenson, MD
Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center
Joseph Mikhael, MD
Role: Dir. Myeloma Research, CMO at International Myeloma Foundation (IMF)
Focus: Multiple myeloma
Provider: TGen/City of Hope