Multiple Myeloma Stories & Treatment | The Patient Story

 Multiple Myeloma Stories & 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.


Multiple Myeloma Basics

Multiple myeloma is a cancer of plasma cells. Multiple myeloma occurs when plasma cells become cancerous and grow out of control. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

“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.

What’s Myeloma?

Our top myeloma specialists answer questions about what multiple myeloma is.

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Intro from the Experts

Hear an introduction of multiple myeloma from our top experts, like Dr. Rafael Fonsceca.

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Myeloma Clinical Trials

Learn about the basics of clinical trials and how to participate.

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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
Relapsed Refractory Multiple Myeloma | Clay’s Story

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Multiple Myeloma Stories: Stage 3 | Melissa’s Patient Story

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
...
Refractory Multiple Myeloma | Elise’s Story

Elise D.



Diagnosis:Multiple myeloma, refractory
1st Symptoms:Lower back pain, fractured sacrum
Treatment: CyBorD, Clinial trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
...
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)
Multiple Myeloma Stories: IgG Lambda |  Scott’s Patient Story

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 Stories, IgG Stage 3 | Jude’s Patient Story

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.”

Light Chain Multiple Myeloma| Carlos’ Patient Story

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
Relapsed Refractory Multiple Myeloma | Beth’s Story

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
Multiple Myeloma Stories: Smoldering Multiple Myeloma (SMM) | Maui Bigelow

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
Multiple Myeloma Stories: Stage 3 | Melissa’s Patient Story

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
Multiple Myeloma Stories, IgG Stage 3 | Jude’s Patient Story

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
Refractory Multiple Myeloma | Elise’s Story

Elise D.



Diagnosis:Multiple myeloma, refractory
1st Symptoms:Lower back pain, fractured sacrum
Treatment: CyBorD, Clinial trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone
Relapsed Refractory Multiple Myeloma | Beth’s Story

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
Multiple Myeloma Stories: IgG Lambda |  Scott’s Patient Story

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 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.

New Series: 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.

Read more →

Newest Treatment for Multiple Myeloma  | Dr. Rafael Fonseca

Rafael Fonseca, MD



Role:Interim executive director, hematologist-oncologist
Focus:Multiple myeloma, new drug development
Institution:Mayo Clinic
Dr. Nina Shah, Multiple Myeloma | The Patient Story

Nina Shah, MD



Role:Hematologist-oncologist, researcher
Focus:Multiple Myeloma
Institution:University of California, San Francisco (UCSF)
Dr. Irene Ghobrial, Multiple Myeloma | The Patient Story

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)
Dr. James Berenson, Multiple Myeloma| The Patient Story

James Berenson, MD



Oncologist: Specializing in myeloma and other blood and bone disorders
Experience: 35+ years
Institution: Berenson Cancer Center