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., 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

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

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. feature

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

Treatment: Chemotherapy: Revlimid, Velcade, and Dexamethasone; Darzalex, Kyprolis, and Dexamethasone; Stem cell transplant)

Scott

Scott C., Refractory Multiple Myeloma, Stage 3



Symptoms: Pain in hips and ribs, night sweats, weight loss, nausea

Treatment: Clinical trial, chemo, kyphoplasty, stem cell transplant
Jude

Jude A., Multiple Myeloma, Stage 3



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
...

Brad H., Smoldering High-Risk Multiple Myeloma



Symptoms: Abnormal kidney function (stage 2 kidney disease), mild anemia
...

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

Melissa V., Multiple Myeloma, Stage 3



Symptoms: Frequent infections

Treatments: IVF treatment & chemotherapy (RVD) for 7 rounds
Jude

Jude A., Multiple Myeloma, Stage 3



Symptoms: Pain in back, hips and ribs; difficulty walking

Treatment: Bilateral femoral osteotomy, reversal due to infection; chemotherapy

Relapsed/refractory treatment

Theresa T. feature profile

Theresa T.



Diagnosis: Multiple myeloma, relapsed/refractory

Subtype: IgG kappa Light Chain

Initial Symptom: Extreme pain in right hip

Treatment: Chemotherapy, CAR T-cell therapy, stem cell transplant, radiation
Laura E. feature profile

Laura E.



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

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., Refractory Multiple Myeloma



Symptoms: Lower back pain, fractured sacrum

Treatments: CyBorD, Clinical trial of Xpovio (selinexor)+ Kyprolis (carfilzomib) + dexamethasone

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)