Multiple Myeloma Stories

 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

Clay D.



Diagnosis: Multiple myeloma
1st Symptoms:
Persistent kidney issues, nausea
Treatment:
chemo, radiation, stem cell transplant
...
Melissa

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 multiple myeloma

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. feature

Ray H.



1st signs: Hemorrhoids, low red blood cell count
Treatment: Immunotherapy, Chemotherapy, Stem Cell Transplant
...
Valarie T. feature profile

Valarie T.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Jenny A. feature profile

Jenny A.



Symptoms: Nose bleeds, fatigue, back pain
Treatment: Chemotherapy, stem cell transplant
...
Keith G.

Keith G.



Symptoms: High levels of protein
Treatment: Chemotherapy, stem cell transplant
...
Julie C.

Julie C.



Symptoms: Queasiness, food aversions, lack of appetite, fatigue
Treatment: Stem cell transplant, chemotherapy (D+PD), bispecific antibodies (talquetamab & cevostamab)
...
Erin H. feature profile

Erin H.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Gregory P. feature profile

Gregory P.



Symptoms: Back pains
Treatment: Chemotherapy, stem cell transplant
...
Laura E. feature profile

Laura E.



Symptom: Increasing back pain
Treatments: Chemotherapy, stem cell transplant, bispecific antibodies
...

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

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

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

Melissa V.



Diagnosis: Multiple myeloma, stage 3
1st Symptoms:
Frequent infections
Treatment:
IVF treatment & Chemotherapy (RVD) for 7 rounds
Jude

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

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.

Dr. Alfred Garfall and Jack Aiello interview

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.

Read more →

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 →

Valarie Traynham and Dr. Shakira Grant

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
Dr. Joseph Mikhael

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
Dr. Vincent Rajkumar

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.
Jack Aiello and Dr. Shaji Kumar

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.

Dr. Muhamed Baljević and Dr. Josh Richter

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.

Dr. Caitlin Costello Dr. Sagar Lonial

Newly Diagnosed Multiple Myeloma Highlights from ASH 2022



Dr. Caitlin Costello and Dr. Sagar Lonial discuss treatments for newly diagnosed multiple myeloma patients.

Dr. Saad Usmani

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.
Dr. Ajai Chari and Dr. Sandy Wong

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.

Dr Gasparetto

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 Latest in Multiple Myeloma Treatments - Clinical Trials

The Latest in Multiple Myeloma Treatments: What Clinical Trials are Available to Me?



Patient advocate Cindy Chmielewski, experts Dr. Carl Ola Landgren and Dr. Caitlin Costello, together with clinical trial nurse Christen Hawthorne uncover groundbreaking insights on the latest multiple myeloma treatments and clinical trials.
Jack Aiello and Dr. Alfred Garfall feature profile

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.