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.
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.
Diagnosis: Multiple myeloma
1st Symptoms: Persistent kidney issues, nausea
Treatment: chemo, radiation, stem cell transplant
...
Melissa V.
Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Frequent infections
Treatment: IVF treatment & Chemotherapy (RVD) for 7 rounds
...
Elise D.
Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
Marti P.
Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Dizziness, confusion, fatigue, vomiting, hives
Treatment: Chemotherapy (Bortezomib/Velcade), Daratumumab/ Darzalex, Lenalidomide, Revlimid) and stem cell transplant
...
Ray H.
1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T.
Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Julie C.
Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...
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)
Scott C.
Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment: Clinical trial, chemo, kyphoplasty, stem cell transplant
Jude A.
Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Pain in back, hips and ribs; difficulty walking
Treatment: 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.
Diagnosis: Smoldering myeloma
Cancer Details: Smoldering myeloma is pre-symptomatic or pre-treatment multiple myeloma
1st Symptoms: Inflammatory eye disease, uterine bleeding
Treatment: N/A
...
Stories by treatment
1st line treatment
Melissa V.
Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Frequent infections
Treatment: IVF treatment & Chemotherapy (RVD) for 7 rounds
Jude A.
Diagnosis: Multiple myeloma, stage 3
1st Symptoms: Pain in back, hips and ribs; difficulty walking
Treatment: Bilateral femoral osteotomy, reversal due to infection; chemotherapy
Relapsed/refractory treatment
Donna K.
Diagnosis: Multiple myeloma, refractory
1st Symptoms: None, found by blood tests
Treatment: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T, selinexor-carfilzomib
Connie H.
Diagnosis: Multiple myeloma, relapsed refractory
1st Symptoms: Chronic bone pain
Treatment: IV Chemotherapy, CAR T cell therapy
Elise D.
Diagnosis: Multiple myeloma, refractory
1st Symptoms: Lower back pain, fractured sacrum
Treatment: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
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
Scott C.
Diagnosis: Multiple myeloma, relapsed/refractorySubtype: IgG lambda (majorityof myelomas)
1st Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea
Treatment: Clinical trial, chemo, kyphoplasty, stem cell transplant
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.
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.
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
Nina Shah, MD
Role: Hematologist-oncologist, researcher
Focus: Multiple Myeloma
Institution: University of California, San Francisco (UCSF)
Rafael Fonseca, MD
Role: Interim executive director, hematologist-oncologist
Focus: Multiple myeloma, new drug development
Institution: Mayo Clinic
Vincent Rajkumar, MD
Dr. Vincent Rajkumar, a hematologist oncologist at the Mayo Clinic, talks about drug pricing and the impact of high prescription drug costs on patients and families.
High-Risk Smoldering Multiple Myeloma Highlights from ASH 2022
Patient advocate Jack Aiello and hematologist Dr. Shaji Kumar discuss what high-risk smoldering patients can do to delay or possibly avoid progression to active myeloma.
Multiple Myeloma in 2023
Long-time myeloma patient and advocate, Jack Aiello, leads the conversation with Dr. Joshua Richter, Multiple Myeloma Director for Blavatnik Family Chelsea Medical Center at Mount Sinai and Dr. Muhamed Baljević, Plasma Cell Disorders Research Director for Vanderbilt-Ingram Cancer Center.
Newly Diagnosed Multiple Myeloma Highlights from ASH 2022
Dr. Caitlin Costello and Dr. Sagar Lonial discuss treatments for newly diagnosed multiple myeloma patients.
Saad Z. Usmani, MD
Dr. Saad Usmani, Chief of Myeloma Service at Memorial Sloan Kettering, talks about CAR T-cell therapy, bispecific antibodies, novel therapies and combination therapies.
Relapsed/Refractory Multiple Myeloma Highlights from ASH 2022
Multiple myeloma specialists Dr. Ajai Chari with Mount Sinai in New York and Dr. Sandy Wong with the University of California San Francisco discuss the big buzz at this year’s ASH: bispecific antibodies.
The Doctor Talk w/ Dr. Gasparetto & Dr. Richter
Role: Dr. Cristina Gasparetto (Duke) and Dr. Joshua Richter Mount Sinai discuss latest relapsed refractory multiple myeloma treatments
The Role of Bispecific Antibodies in the Treatment of Multiple Myeloma
Hematologist Alfred Garfall, MD, MS, from Penn Medicine discusses with multiple myeloma patient advocate Jack Aiello 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.