Compazine keratopathy Multiple Myeloma Non-secretory Relapsed/Refractory

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

Relapsed Refractory Multiple Myeloma

Beth’s Story

Beth was just 29 years old and the mother of two young kids when she was diagnosed with multiple myeloma. She describes how she got through first-line treatment of radiation, chemotherapy, and a successful stem cell transplant.

For 12 years, Beth lived her life with no sign of myeloma. When her pain returned, she didn’t think much of it after a doctor concluded it was unrelated to the myeloma. But just a couple years later, an oncologist said the myeloma was back – the cancer had relapsed.

Beth dives into her over-two-decade long myeloma experience, including how the myeloma became triple-refractory (didn’t respond anymore to the usual drugs), the new drugs that worked and didn’t work, and how she has managed to live her fullest life with the disease.

Explore her incredible 5-part story series below. Thank you so much for sharing, Beth!

Thank you to Karyopharm for its support of our educational program. The Patient Story has full editorial control of our content. The interview has been edited only for clarity.

1: Early Symptoms

Beth describes her first symptoms of multiple myeloma and shares how she successfully advocated for herself at the doctor’s office to get a diagnosis.

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2: Small Town Treatment

After advocating for herself to finally get a multiple myeloma diagnosis, Beth talks about dealing with getting cancer treatment in a small town or rural area.

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3: Beth’s Relapse

12 years after her complete response to first line treatment, Beth’s myeloma relapsed. She shares the second line treatment, side effects, and how she pushed forward.

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Ep. 4: Relapsed/Refractory Treatment

Beth focuses on what treatments she took after her myeloma had become refractory to the 3 main classes of drugs used in treatment. She shares her experiences with belantamab mafodotin (BLENREP) and the combination of selinexor (XPOVIO), bortezomib (Velcade) and dexamethasone, which was successful.

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Ep. 5: Living with Myeloma

Beth shares the impact of the myeloma on her life, including how she decided to retire from work and learning how to accept support from others. She also dives into the importance of participating in clinical trials and in sharing her story, to help heal herself and hopefully others who are looking for some connection.

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  • Name: Beth Ayen
  • Diagnosis (DX)
    • Multiple myeloma
    • Relapsed/refractory multiple myeloma
  • 1st Diagnosis:
    • Age: 29 years old
    • Symptoms: Extreme pain between shoulder blades, sternum, head for 1 year
      • Burning sensation that radiated out
    • Tests for DX:
      • MRI, found a plasmacytoma compressing spinal cord
    • Treatment
      • Radiation therapy
      • Chemotherapy
        • VAD (Vincristine, Adriamycin, Dexamethasone)
    • Autologous stem cell transplant (SCT)
  • Relapse:
    • Age: 45 years old
    • Symptoms:
      • Extreme pain in ribs and head
      • Light chain #s up
    • Treatment:
      • Radiation (193 sessions total over seven years)
      • Chemotherapy (9 regimens since beginning), mainly:
        • Velcade [bortezomib], Cytoxan [cyclophosphamide] and Decadron [dexamethasone]
      • Different drug combinations
        • Elotuzumab (Empliciti)
        • Belantamab mafodotin (BLENREP)
        • Selinexor (XPOVIO)+ bortezomib (Velcade) + dexamethasone

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