WELCOME TO THE LOS ANGELES PATIENT & FAMILY SEMINAR SATURDAY, AUGUST 15, 2026 HEATHER COOPER ORTNER PRESIDENT & CEO
THANK YOU TO OUR SPONSORS!
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SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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MORNING AGENDA 9:00 – 9:15AM
Welcome & Announcements
9:15 – 9:45AM
President & CEO Address
9:45 – 10:30AM
Fireside Chat: What is the Future of Myeloma?
10:30 – 10:45AM
BREAK
10:45 – 11:45 AM
Breakout Sessions #1: Treating Myeloma Breakout A: Newly Diagnosed: Frontline Therapy Breakout B: Managing Relapsed Myeloma
11:45 - 12:45PM
LUNCH
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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AFTERNOON AGENDA 12:45 – 1:30PM Journey
Find Your Path: Navigating Your Myeloma
1:30 – 1:45PM Myeloma
Closing the Gap: Health Disparities in
1:45 – 2:45PM Partners
Breakout Sessions #2: Patients and Care Breakout A: Patients Only – Lessons Learned Breakout B: Care Partners Only
2:45 – 2:50PM
RETURN TO MAIN SESSION Grab-and-Go Refreshments
2:50 – 3:20PM
Controversies in Myeloma
3:20 – 3:55PM
Ask the Experts with Guest Faculty
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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OUR MISSION Accelerating prevention and cure of myeloma and Improving quality of life for patients and families
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Hope has Evidence
Somewhere today… Someone heard…
“You have multiple myeloma.”
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Somewhere else…
Someone heard…
“You’re in remission.”
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EVERY BREAKTHROUGH begins with a person
11
12
TwentyToday, years ago, Hope means living. Hope meant surviving 13
HOPE HAS EVIDENCE
1997 • The IMF establishes the International 1980s Myeloma Working • High-dose chemotherapy Group followed by Autologous Stem Cell 1844 Transplant • 1st improves documente survival d case of multiple myeloma described by Samuel Solley
1998 • FDA approves Thalidomide for myeloma, ushering in the era of novel therapies
2024 • The FDA’s ODAC voted 120 that evidence supports using MRD negativity as and endpoint for accelerated approval of new myeloma therapies
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Research Changes What Is Possible 15
From Discovery to Every Patient
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A Connected Continuum
Diagnosis
Living Well
Relapse
Living Well
Frontline Therapy
Education & Support
Next Line of Therapy
Education & Support
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Myeloma changes quickly. Your information should, too.
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The right information. The right trial. The right answers for you.
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NEW
IMF CARES
Expanding awareness, equity, & access through community-based education © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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NEW
Myeloma Care Navigation
Personalized care navigation, compassionate resource referrals, & real-time help for every myeloma question
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NEW
Myeloma Sessions
Meaningful connections, expert education, & guided support for every stage of myeloma © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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More than Programs 23
The Quiet Heroes
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We Hear You “My partner gets the support they need too.”
“I wish someone could explain this in plain language.”
“Is there someone I can talk to?” “I’m overwhelmed trying to understand this disease I’ve never heard of
“I don’t understand my insurance.”
“I don’t know what questions to ask.” 25
No one should navigate myeloma alone
Connection
Understanding
Knowledge
Belonging
Hope
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Shared experience creates an even deeper connection MM Families Living Solo & Strong Veterans Las Voces de Mieloma MM in the Middle
Care Partners Only Smolder Bolder Living with High-Risk Myeloma
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Every person. Every stage. Every community. 28
Meeting People
Where They Are 29
Why We Are Here.
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Scientific breakthroughs change medicine. Human connection changes lives. Hope has evidence. 31
FIRESIDE CHAT: WHAT IS THE FUTURE OF MYELOMA? WITH Q&A Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor Tara Gregory, MD Colorado Blood Cancer Institute, Denver, CO
BREAK WHEN YOU RETURN FROM BREAK, PLEASE HEAD TO YOUR SELECTED BREAKOUT SESSION: BREAKOUT A: NEWLY DIAGNOSED: FRONTLINE THERAPY Ballroom A – Next door BREAKOUT B: MANAGING RELAPSED MYELOMA Please remain in this room
SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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Relapsed/Refractory Multiple Myeloma Robert Vescio, MD Director, Multiple Myeloma & Amyloidosis Program Samuel Oschin Comprehensive Cancer Center Cedars-Sinai Medical Center, Los Angeles CA
cedars-sinai.org
Myeloma Drug Classes Approved Agents Immunomodulatory Drugs (IMiDs)
Proteasome Inhibitors (PIs)
Monoclonal Antibodies (mAbs)
Thalidomide
Bortezomib
Elotuzumab
Lenalidomide
Carfilzomib
Daratumumab
Conventional
Cyclophosphamid e Melphalan
Novel Mechanisms
Selinexor
Panobinostat
BCMA Targeted Drugs
GP5RCD Targeted Drugs
Car-T:
Idecabtagene Vicleucel Citlacaptagene Autoleucel
Bispecific Ab
Talquetamab
Bispecific AB Pomalidomide
Ixazomib
Isatuximab
Doxorubicin Bendamustine
Teclistamab Elranatamab 36Linvoseltamab
HyperCVAD/DCEP
Large number of drugs
= Dizzying array of 2-4 drug combination regimens available
Relapse of Disease (Important Factors)
• Two categories:
◦ Relapse due to symptoms • Pain, new bone lesion/fracture, a lump (plasmacytoma), hypercalcemia, kidney injury • This needs more urgent treatment. • Need higher chance of working even if higher chance of side effects/inconvenience • An unsuccessful regimen can be a problem • Generally, the myeloma cells behave aggressively when not controlled
◦ Relapse by lab tests, no symptoms • Rapid relapse by labs (see above) – regimen chosen needs higher chance of working • Slow relapse – can opt for more convenience, less side effects if it will not impact the future choices
3 7
Patient #1 • Presented in Sep 2007 at age of 46 with a mass in her mandible (jaw). Kidneys involved with creatinine of 2.7. Radiation then started on a study we had (Velcade/Cytoxan/Dexamethasone alternating with Velcade/Thalidomide/Dexamethasone). Lambda 5650
◦ Went into remission • Apr 2028 = Autologous stem cell transplant • Jul 2008 - Sept 2016 = Revlimid maintenance (diarrhea) • Jan 2021 – Lambda light chains 80, bone marrow small amount of disease
◦ Started Daratumumab(Darzalex/Faspro)/Velcade/Dex • Velcade and dex stopped July 2021
◦ Continued Daratumumab alone • Stopped daratumumab Apr 2025 • Now progressing with Lambda 75 3 8
Terms to Know
Median Timepoint where 50% of patients do better and 50% of patients do worse Splits the population in half (half better, half worse)
Progression Free Survival Time it takes from starting the treatment to the time the disease first relapses Progresses by labs or visible tumor
Myeloma Drug Classes Approved Agents Immunomodulatory Drugs (IMiDs)
Proteasome Inhibitors (PIs)
Monoclonal Antibodies (mAbs)
Thalidomide
Bortezomib
Elotuzumab
Lenalidomide
Carfilzomib
Daratumumab
Conventional
Cyclophosphamid e Melphalan
Novel Mechanisms
Selinexor
Panobinostat
BCMA Targeted Drugs
GP5RCD Targeted Drugs
Car-T:
Idecabtagene Vicleucel Citlacaptagene Autoleucel
Bispecific Ab
Talquetamab
Bispecific AB Pomalidomide
Ixazomib
Isatuximab
Doxorubicin Bendamustine
Teclistamab Elranatamab 40Linvoseltamab
HyperCVAD/DCEP
Large number of drugs
= Dizzying array of 2-4 drug combination regimens available
Venetoclax (Venclexta) for Multiple Myeloma with t(11:14) • Venetoclax blocks BCL-2 which is a key protein that is altered in plasma cells with the t(11:14) mistake • Daratumumab with Venetoclax and dexamethasone led to a > 90% response rate for those with this abnormality • Venetoclax is a pill
◦ Not approved but available if asked for through the company ◦ Dose to use unclear but up to 800 mg (8 pills) a day have been given • I typically try for 400 mg but many patients don’t tolerate this much due to nausea and diarrhea at higher doses • Key point: You need to know if YOUR myeloma cells have the t(11:14) abnormality 4 1
CAR T-Cell Therapy
2 Transduction with BCMA CAR
4 Infusion of CAR T-cells CAR T-cell infusion
CAR T-Cells 1 Leukapheresis
Lymphodepleting chemotherapy
Viral vector scFv Signaling Domain
CAR T-cell
3 Expansion of CAR T-cells
In myeloma, CAR T-cells target myeloma-specific antigens, eg, BCMA Klebanoff. Nat Rev Clin Oncol. 2014;11:685.
Slide credit: clinicaloptions.com
Cartitude-1 (Cilta-cel): Refractory patients – Potential CURE NY Times: From No Hope to a Potential
ORR by IRC
Patients (%)
100
Cure for a Deadly Blood Cancer; June 3, 2025
ORR 97.9% (95/97)
80 60
sCR 82.5%
82.5%
≥ VGPR 94.8%
40 20 0
Best Response
3.1% sCR
12.4% VGPR
PR
Median Overall Survival = 60 months Usmani. ASCO 2022. Abstr 8028. Lin. EHA 2022. Abstr P961. Usmani. SOHO 2022. Abstr MM-181. ; Voorhees. ASCO 2025. Abstr 7507 NY Times June 3, 2025
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Cilta-Cel: Carvykti Unique Side Effects • A subacute to late-emerging hypokinetic movement disorder with many features of parkinsonism was first reported in 5 of 97 patients (5%) enrolled in the CARTITUDE-1 study • Cranial nerve palsies (also were noted) that tended to resolve • Cartitude – 4 trial = 1 patient with movement disorder occurred 44
Comparison of Ide-Cel (Abecma) vs Cilta-Cel (Carvykti): Standard of Care Retrospective Analysis Progression-Free Survival 641 patients at 19 institutions given Car-T therapy as part of Standard of Care Cilta-Cel
Delayed Neurotoxicity: Ide-Cel = 0.6% vs Cilta-Cel 10%
Ide-Cel
Infection: Ide-Cel = 35% vs Cilta-Cel 47% Cause? = Cilta-Cel higher BCMA binding
Hansen, et.al., J Clin Oncol (2025), 43:1597-1609
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Other BCMA-directed Car-T cell therapies in Trials (Heavily Treated) Anito-cel, a BCMA CAR T-cell therapy with a novel D-domain binder − ORR: 96%; sCR/CR: 74% − MRD negativity in MRD-evaluable patients: 95% − No noted delayed or non-ICANS neurotoxicity, parkinsonism, cranial nerve palsy, GuillainBarré syndrome, or immune effector cell–associated enterocolitis
AZD0120 a BCMA and CD19 directed CAR T-cell therapy (Dual Target) − ORR: 93%; sCR/CR: 82% − Progression free survival median = 38 months
1. Oliver-Caldes. ASH 2023. Abstr 1026. 2. de Larrea. ASCO 2024. Abstr 7544. 3. Du. ASCO 2023. Abstr 8005. 4. Bal. ASH 2024. Abstr 922. 5. An. Nat Med. 2026;32:1257.
Patel, ASH 2025. Abstract 256 2. NCT06413498
inMMyCAR (KLN-1010) In Vivo Car-T
• KLN-1010
◦ Single administration of the virus (no need to wait 4-6 weeks) ◦ 18 patients dosed ◦ 100% response rate ◦ First patient still MRD negative at 10 months • 16 of 18 with CRS • 1 patient with Grade 1 ICANS, 1 patient with Grade 3 ICANS (3 days)
◦ No delayed neurotoxicity • Study open at City of Hope and UCLA
◦ 3 prior lines of therapy
4 7
Cartitude-4 (Cilta-cel): Carvykti vs Standard of Care
Randomized patients with 1 – 3 prior regimens who had disease resistant to Revlimid (lenalidomide)
Progression-Free Survival
Cilta-cel (Carvykti) (Red) Or Pomalidomide/Bortezomib/Dex Daratumumab/Pom/Dex (Blue)
Usmani. ASCO 2022. Abstr 8028. Lin. EHA 2022. Abstr P961. Usmani. SOHO 2022. Abstr MM-181. ; Voorhees. ASCO 2025. Abstr 7507 NY Times June 3, 2025
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Mechanisms of Resistance to Anti-BCMA CAR T-Cell Therapy CAR T-cell intrinsic
MM cell intrinsic
BCMA loss BCMA downregulation
Lack of persistence T-cell exhaustion
D’Agostino. Leukemia. 2020;34:21.
Microenvironment
Immunesuppressive ligands/molecules
Slide credit: clinicaloptions.com
Car-T Issues • Needs Immune System to work
◦ Waiting until the immune system “beat up” by lots of treatment makes it work less well • Takes time to set up (2 months between decision to do and infusion) • Car-T cells die off
◦ ? Maintenance should be used • If both Car-T and bispecific ultimately to be done, best to do Car-T first
• Doing the Car-T with less tumor burden reduces side effects dramatically
◦ Debulk disease before collection or while being made “bridging” (Talquetmab often used) ◦ We are also learning how to recognize a potential for side effects and intervene before they happen 5 0
Bispecific Antibodies – Grab Myeloma cell and Link it to T-Cell
Antibody that binds to a protein on the surface of the myeloma cell on one end and to a protein on a T-cell on the other end (that activates that cell to attack) Targetable proteins: BCMA, SlamF7, CD38, CD138, GPRC5D, FcRH5 (Proteins on myeloma cell surface but not on other cells)
© 2020 Cedars-Sinai. All Rights Reserved. A 501(c)(3) non-profit organization
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FDA Approved Bispecific Antibody Therapies for Multiple Myeloma Agent Teclistamab Elranatamab Linvoseltamab Talquetamab
Type BCMA x CD3 Bispecific antibody BCMA x CD3 Bispecific antibody BCMA x CD3 Bispecific antibody GPRC5D x CD3 Bispecific antibody
Current Indication ≥4 prior LOT, including an IMiD, PI, and an anti-CD38 mAb ≥4 prior LOT, including an IMiD, PI, and an anti-CD38 mAb ≥4 prior LOT, including an IMiD, PI, and an anti-CD38 mAb ≥4 prior LOT, including an IMiD, PI, and an anti-CD38 mAb
© 2020 Cedars-Sinai. All Rights Reserved. A 501(c)(3) non-profit organization
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Phase I/II studies of Teclistamab and Elranatamab for R/R MM After ≥3 Previous Lines of Therapy (BCMA Targeted)
Patients (%)
80
Response to Teclistamab TECVYALI 104 of 165 patients ORR: 63.0% (95% CI: 55.2-70.4)
BOTH require initial 4-7 day stay in hospital prior to outpatient visits
Patients (%)
100
60 40 20 0
≥ CR: 39.4%
32.7% 6.7% 19.4%
≥ VGPR: 58.8%
sCR CR VGPR PR
4.2% All Patients (N = 165)
Median follow-up: 14.1 mo (range: 0.3-24.4)
100
Response to Elranatamab ELREXFIO
80
35 of 55 patients ORR: 64.0% (95% CI: 50-75)
60 40
≥CR: 35%
25.5% 9.1%
20
23.6%
0
5.5%
≥VGPR: 58.2%
sCR CR VGPR PR
All Patients (N = 55)
Median follow-up: 10.6 mo (range: 0.3-24.6)
Moreau. NEJM. 2022;387:495. Jakubowiak. ASCO 2022. Abstr 8014. Dalovisio. EHA 2022. Abstr P897.
MajesTEC-1 Trial: Duration of Response for Teclistamab
Patients who respond, can stay in remission for a long time
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Lynozyfic (Linvoseltamab) in Multiple Myeloma
Intravenous medicine: 4 hours then 30 minutes after 4th dose Requires hospitalization for 1 day for first two doses At week 14 can go to every 2 weeks At week 24 can go to every 4 weeks if a VGPR or better Side effects not seemingly worse (? Better) © 2020 Cedars-Sinai. All Rights Reserved. A 501(c)(3) non-profit organization
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Infection: A Persistent Concern During Maintenance With Teclistamab
10.0
ns
ns
ns
**
*** *** ***
Observation group Primary prophylaxis
100 P <.001
75
7.5 5.0
IgG levels plummet on bispecifics IVIG can mostly fix this and reduce risk of infection
50
2.5
25
0.0
s do g n mi i r P
The negative impact of BCMA BsAbs on humoral immunity can be partially reversed with IVIG supplementation
Cumulative Incidence Time to First Serious Infection
Immunoglobin G (g/L)
Treatment with BCMA BsAbs results in reduced polyclonal (NORMAL) Ig levels and an impaired vaccination response
e1
D1 D1 3D1 4D1 5D1 6D1 7D1 C1 C2 C C C C C
Impact of teclistamab on polyclonal IgG levels
0
0
3
6 Mo
9
12
Impact of IVIG supplementation on risk of serious infections
Still normal T-cells don’t work as well on these drugs
© 2020 Cedars-Sinai. All Rights Reserved. A 501(c)(3) non-profit organization
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MajesTEC-3: Study Design • Randomized phase III study Patients with R/R MM with 1-3 prior LOTs, including a PI and lenalidomide*; with PD on or after the last LOT; no prior BCMA-directed therapy; not refractory to anti-CD38; ECOG PS 0-2 (N = 587)
•
Teclistamab + Daratumumab SC dosing following Dara schedule† (n = 291) Daratumumab + dexamethasone + pomalidomide (DPd) or Daratumumab + dexamethasone + bortezomib (DVd) investigator’s choice (n = 296)
Most of these patients (95%) had never received daratumumab (or isatuximab) before starting the study so were presumably did not have multiple myeloma resistant to this drug
Mateos. ASH 2025. Abstr LBA6. Costa. NEJM. 2025; Published Online December 9, 2025.
MajesTEC-3: Teclistamab + Dara vs DaraPomDex or DaraVelDex Progression Free Survival 36-mo PFS
Surviving Without Progression (%)
100
83.4%
Tec-Dara Median, NR
80 60 40
29.7% HR, 0.17 (95% CI, 0.12-0.23); P <.0001 Median follow-up: 34.5 mo
20 0
0
3
6
9
12
15
18
21
24 Mo
27
30
33
36
39
42
45
48
291 296
262 254
249 218
240 288
240 167
233 149
230 135
227 124
222 112
218 99
214 87
142 52
89 26
34 14
9 3
0 1
0 0
Pts at risk Tec-Dara DPd/DVd
DPd/DVd Median, 18.1 mo
Mateos. ASH 2025. Abstr LBA6. Costa. NEJM. 2025; Published Online December 9, 2025.
MajesTEC-9 (Comparison of Teclistamab vs PVD or KD Patients with 1-3 prior regimens
Progression-Free Survival
Must have been treated with lenalidomide (Revlimid) and a CD38 antibody (Daratumumab or Isatuximab) Randomized to: Teclistamab (Tecvayli) (Blue) Or Pom/Vel/Dex or Kyprolis/Dex (Purple)
© 2020 Cedars-Sinai. All Rights Reserved. A 501(c)(3) non-profit organization
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Sustained Remission after Limited-Duration Bispecific Antibody Therapy (Relapsed Multiple Myeloma) • Retrospective analysis of patients
◦ 78 patients analyzed, Age (26-86), 47% high-risk cytogenetics • Median duration of treatment = 7 months before stopping
◦ Range = 1-40 months • 80% in complete remission when stopped • 2-year freedom from relapse
◦ 48% if patients had 6 or more prior lines of treatment ◦ 78% if 1-5 prior lines • 2 patients retried after relapse – one responded and one did not
Meera Mohan (Toronto IMS meeting Sep 17)
6 0
MonumenTAL: Talquetamab Efficacy TALVEY 100.0% 90.0% 80.0% 70.0% 60.0% 50.0%
Treatment Response ORR 70.0%
Duration of Response at 800 µg/kg Median 7.9 months follow-up
ORR 66.7%
10.0%
9.5%
3.3% 40.0%
9.5% 33.3%
40.0% 30.0% 20.0% 10.0% 0.0%
14.3%
16.7% 405 ug/kg QW PR
N = 30 VGPR
800 ug/kg Q2W N = 25 CR
sCR
Krishnan AY, et al. Blood. 2021;138:158.
• Targets GPRC5D • Should not alter effectiveness (much) of Car-T based therapy directed against BCMA (Abecma, Carvykti) Used more and more as bridging
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Talquetamab (Talvey) Side Effects Abnormal taste (Food tastes “rancid”) Dry skin and cracking nails
Symptoms do improve over time even if drug not stopped 62
Belantamab Mafodotin: BCMA-Targeted ADC Phase DREAMM-7: Belantamab + VD vs Dara-VD (Relapsed MM)
Tumor antigen
Stable linker releases payload only in target cell
Antigenbinding Site
mAb that targets tumor-specific or tumorassociated antigens
Belantamab Mafodotin + Velcade + Dexamethasone Vs. Daratumumab + Velcade + Dexamethasone
Potent cytotoxic agent
Toxicity = Keratopathy (reversible) Requires eye exam prior to each dose Almost all will obtain if they respond
Tai. Blood. 2014;123:3128. Trudel. Lancet Oncol. 2018;19:1641. Trudel. Blood Cancer J. 2019;9:37. Belantamab mafodotin PI.
New Drugs • Mezigdomide and Iberdomide
◦ New IMIDs (pills) that seem to work better than pomalidomide and lenalidomide • Mezigdomide to possibly replace pomalidomide (Pomalyst) – MOST Potent • Iberdomide to possibly replace lenalidomide (Revlimid) – Less side effects
◦ We have a study using Iberdomide after using the Car-T therapy Abecma ◦ We are trying to open a study to use Iberdomide (instead of Revlimid) with daratumumab after stem cell transplantation
◦ Mezigdomide available for those with few other options (compassionate use) • Cevostamab (Targets different protein FcRH5) – Bispecific antibody • Etentamig – Bispecific to BCMA (in a study at Cedars-Sinai after only 3 lines of treatment)
◦ Intravenous every 4 weeks, no hospital admission (wearable device monitor) • JNJ-5322 – Trispecific to BCMA and GPRC5D (86% response rate = abnormal taste, rash, low WBCs) 6 4
Iberdomide + Daratumumab + Dex (Newly Diagnosed Multiple Myeloma) • Newly diagnosed patients randomized to 1, 1.3 or 1.6 mg of Iberdomide (Day 1-21) • Daratumumab 1800 mg shot (weekly x 8, every 2 weeks x 8, every 4 weeks) • Dexamethasone 40 mg orally (weekly) if > 75 years old dose started = 20 mg • 95% of patients responded • Main side effects (low blood counts – pancytopenia) and infections • 12% stopped due to adverse side effects • 9% stopped due to progressive disease
• Iberdomide + Daratumumab + Dex compared to Daratumumab + Velcade + Dex (Relapsed MM)
◦ Higher MRD achievement with the Iberdomide regimen ◦ FDA approval for Iberdomide deadline date in 2 days (Aug 17) Sagar Lonial, Toronto IMS Meeting Sep 19
6 5
Isatuximab (Sarclisa) SC Administration With Wearable Bolus Injector
Isatuximab (Sarclisa) normally given IVPB (in a vein over 75 minutes) New device looking at subcutaneous administration to make things easier and faster Approved for use July 6, 2026 (Sarclisa Escena) Newly Diagnosed Patients (ISASOCUT TRIAL) SQ Isatuximab weekly x 4 then every other week SQ Velcade twice per week then weekly Revlimid and Dexamethasone Response rates = 87% Neurological side effects = 47%
ISASOCUT Trial Arthur Bobin Toronto IMS Meeting Sept 19
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Patient #1 • Presented in Sep 2007 at age of 46 with a mass in her mandible (jaw). Kidneys involved with creatinine of 2.7. Radiation then started on a study we had (Velcade/Cytoxan/Dexamethasone alternating with Velcade/Thalidomide/Dexamethasone). Lambda 5650
◦ Went into remission • Apr 2028 = Autologous stem cell transplant • Jul 2008 - Sept 2016 = Revlimid maintenance (diarrhea) • Jan 2021 – Lambda light chains 80, bone marrow small amount of disease
◦ Started Daratumumab(Darzalex/Faspro)/Velcade/Dex • Velcade and dex stopped July 2021
◦ Continued Daratumumab alone • Stopped daratumumab Apr 2025 • Now progressing with Lambda 75 6 7
Summary of Current Treatment Approaches for Relapsed Multiple Myeloma
More drugs give more options for efficacy, convenience Since it is not often curable; remission is not THE #1 goal …. But it is nice to have
KEY = Controlled tumor suppression after initial debulking with a regimen that is tolerated well Do not stop effective treatment if possible • Determine whether a dose reduction of a drug can make effective regimen tolerable • Dose intensity seems to matter so don’t arbitrarily reduce doses Toxicity of treatment is typically << toxicity of substantial recurrent disease
Multiple Myeloma: Summary
Responses > 90% after diagnosis with improved symptoms is typical Lab tests often demonstrate progression prior to symptom development Treat if lab shows progression = do not wait for symptoms, organ injury, low blood counts New treatments approved yearly - Car-T cell therapy, Bispecific antibodies to come, next generation “Imids (Iberdomide and Mezigdomide = pills), Trispecific antibodies. But for now, biggest impact is appropriate and best use of current drugs Use of more potent drugs EARLY will make huge impact in duration of disease control and CURE FOR MORE and then ultimately MOST
SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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LUNCH Please move to Ballroom B
FIND YOUR PATH: NAVIGATING YOUR MYELOMA JOURNEY IMF Nurse Leadership Board
Mary Steinbach, DNP, APRN Huntsman Cancer Institute at the University of Utah
Find Your Path: Navigating Myeloma
Mary Steinbach DNP, APRN, FNP-C Huntsman Cancer Institute University of Utah & NLB Member
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Myeloma’s Terrain
AGENDA
Starting Your Trek Changing Course Staying on Trek
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Myeloma’s Terrain: Finding Your Footing
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Myeloma Is a Cancer of the Plasma Cells In Multiple Myeloma,
Myeloma’ s Terrain Bone marrow
one plasma cell mutates, making many identical plasma cells (monoclonal).
Plasma Cells come from white blood cells produced in the bone marrow and make many different antibodies to help fight infection (polyclonal).
7 6
Myeloma Causes Cell Dysfunction & Symptoms
Decreased red blood cells Decreased white blood cells
Anemia & Fatigue Immune Dysfunction & Infection
Myeloma protein in blood and urine
Clonal myeloma plasma cells can cause many issues • Crowd out normal bone marrow cells • Can cause kidney dysfunction • Affect bone cells (balance of osteoclasts & osteoblasts)
ag e
Changes in bone remodeling
Renal Dysfunction
Calcium Elevation
Bone marrow
Anxiety Stress Depression
Bo ne Da m
Myeloma’ s Terrain
7 7
Infections Are Serious for People with Myeloma Myeloma’ s Terrain
Preventing infections is paramount. Infection remains the leading cause of death in patients with multiple myeloma. Several factors account for this infection risk, including the overall state of immunosuppression from multiple myeloma, treatment, age, and comorbidities (e.g., renal failure and frailty). IMWG Consensus guidelines and recommendations for infection prevention in multiple myeloma; Lancet Haematol.2022;9(2):143– 161.
Infection Prevention Tips Good personal hygiene (skin, oral)
Environmental control
(avoid crowds and sick people; use a high-quality mask when close contact is unavoidable)
Report fever of more than 100.4°F, shaking chills even without fever, dizziness, shortness of breath, low blood pressure to HCP as directed.
As recommended by your healthcare team:
Immunizations:
Flu, COVID, RSV & and pneumococcal vaccinations; avoid live vaccines
IMWG = International Myeloma Working Group; HCP = healthcare provider. Raje NS, et al. Lancet Haematol.2022;9(2):143–161. IMF Nurse Leadership Board ONS Symposia 2024.
Preventative and/or supportive medications 7 8
Kidney and Bone Health Myeloma’ s Terrain
Protect Kidney Function
Protect Bone Health
Myeloma Treatment
•
Myeloma Treatment
Stay hydrated--drink water
•
Nutrition
Avoid certain medications
•
Vitamin D
•
Calcium (if approved by doctor)
•
Weight-bearing activity (e.g., walking, standing, climbing stairs, stretching, dancing)
•
Bone-strengthening agents (prescribed by your healthcare team)
• •
IV contrast dyes NSAIDs like Advil (ibuprofen), Aleve (naproxen)
Be alert: symptoms of kidney dysfunction • • • • • • • • •
Fatigue and weakness Nausea and vomiting Foamy or dark urine Swelling in feet, ankles, or face Shortness of breath Persistent itching Loss of appetite Muscle cramps High blood pressure
Report any new or worsening bone pain to your healthcare provider
Raje NS, et al. Lancet Haematol.2022;9(2):143–161. IMF Nurse Leadership Board ONS Symposia 2023. Miceli TS, et al. Clin J Oncol Nursing. 2011;15(4)suppl:9-23; Dimopoulous M, et al. Leukemia. 2009; 23(9):1545-56.
7 9
Easing the Way: Pain Management Myeloma’ s Terrain
8 0
Pain can significantly compromise quality of life and add to distress. Sources of pain include bone disease, neuropathy and medical procedures. Treatment Prevention Interventions depend on source of pain, may include • Medications, Surgery, Radiation therapy, etc. • Physical therapy & continued activity, complementary therapies (Mind-body, meditation, yoga, supplements, acupuncture, etc.) • Scrambler therapy for neuropathy
•
Decrease fracture risk through myeloma treatment, bone strengthening agents, physical activity, preventative surgery
•
Prevent Nerve Damage: prevent shingles, manage diabetes, myeloma medication dosing and route of administration
•
Combine scheduled medical procedures, when possible (Ex. blood draw,Discuss biopsy),with use your sedation if available healthcare provider new bone pain or chronic pain that is not well controlled and decreasing pain medication if pain has improved.
Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Sweiss, K. et al. ASH Abstract #283, 2024. Joseph, J., et al. ASH abstract #705, 2024. Chang D., et al., Blood 2024, Abstract 2287.
8 0
Starting Your Trek: Initial Treatment
Charting the Course of Myeloma HR-SMM Therapy
10
M-Protein g/L
Starting Your Trek
Front-Line Therapy
Second-Line Therapy
≥ Third-Line Therapy
ACTIVE MM
ACTIVE MM
5
ACTIVE MM d
2
MGUS SMM HR-SMM REMISSION
Dominant MM Clones Change Over Time
REMISSION
Time Misc
Clone 1.1
Clone 1.2
Clone 2.1
HR-SMM = high risk smoldering multiple myeloma; M-protein = monoclonal protein; MGUS = monoclonal gammopathy of undetermined significance; misc = miscellaneous (no dominant clone); MM = multiple myeloma; SMM = smoldering multiple myeloma. Adapted from Durie B. Keats JJ, et al. Blood. 2012;120(5):1067-1076.
Clone 2.2
8 2
Why Shared Decision Making in Multiple Myeloma? The relapsing nature of multiple myeloma means patients Starting Your Trek
and their care partners may have multiple points to make decisions about treatment & care People with myeloma are living longer; goals, preferences, and values may change over time
“The aim of shared decisionmaking is to ensure that:
- Patients understand their options and the pros and cons of those options. - Patient's goals and treatment preferences are used to guide decisions.”
83
Patient and Care Partner Roles in Shared Decision Making – Come Prepared Starting Your Trek
Ask questions (write them down in advance of visit)
Express your desire to participate in the treatment decisions
Ask for time (if needed/ appropriate)
• What are my treatment options? • What are the pros and cons of each option? Efficacy? Side effects? Administration? Insurance nuances? • Are there treatments that wouldn’t be a good option for me? Why?
• I want to make sure the treatment we chose is the best option for me • I want to be sure we are choosing the best therapy for my husband/wife
• There is a lot to think about. Can I/we have some time to consider the options? • Ask for information you can consider at home • Note: if medical emergency/high risk, may not be appropriate
84
Patient and Care Partner Roles in Shared Decision Making Starting Your Trek
Understand options; consider priorities
• Use reliable sources of information like the IMF and “Myelo” • Use caution when considering stories of personal experiences • Consider your goals, values and preferences
Express your goals/values/preferences; create a dialog
Arrive at a treatment decision together
• My top priority is [goal/value]; additional [preferences] are also important. • I think [treatment] may be a good choice given my priorities… What do you think? • What treatment would you recommend given my goals and priorities? 85
IMF Has Resources to Help You Be A Part of Your Treatment Decisions Starting Your Trek
•
Be empowered to be part of decision-making
• Stay informed, understand options • Use reliable and current sources of
information
Research Results
HCP Clinical Experience TREATMENT DECISION
Your Preference
• Use caution considering stories of personal
experiences
•
Philippe Moreau. ASH 2015.
Consider your priorities •
Discuss with your care partner
• Consider your goals/values/preferences •
Be a part of the conversation, create a dialog •
Ask questions & Express your goals/values/preferences
•
Ask for time to consider options, if needed
•
Arrive at a treatment decision together
•
Arrange follow up to review and adjust, if needed
Decision Aids available at Myeloma.org
Steroids: Part Of The Treatment Plan Starting Your Trek
Steroids enhance the effectiveness of other myeloma therapies Your provider may decrease or discontinue the dose as myeloma responds to therapy. Do not stop or alter your dose of steroids without discussing it with your provider
Possible Steroid Side Effects • Irritability, mood swings, • Difficulty sleeping
Managing Steroid Side Effects
depression
(insomnia), fatigue
• Blurred vision,
• Flushing/sweating
• Consistent schedule (AM vs. PM)
• Stomach bloating,
• Take with food
cataracts
• Increased risk of
infections, heart disease
• Muscle weakness,
cramping
• Increased blood
pressure, water retention
hiccups, heartburn, ulcers, or gas
• Weight gain, hair
thinning/loss, skin rashes
• Increased blood sugar
• Stomach discomfort: Overthe-counter or prescription medications • Medications to prevent shingles, thrush, or other infections
levels, diabetes
Rajkumar SV, et al. Lancet Oncol 11(1):29–37. King T, Faiman B. Clin J Oncol Nurs. 2017;21(2):240-249. Banerjee,R. et al. Blood 9.25.24
9 0
Peripheral Neuropathy Starting Your Trek
Peripheral neuropathy happens when there is damage to nerves in the extremities (hands, feet, limbs). Damage can be the result of myeloma, treatment or unrelated conditions (i.e., diabetes).
Symptoms:
Prevention / management:
Numbness
Bortezomib once-weekly and/or subcutaneous administration
Tingling Prickling sensations Sensitivity to touch Burning and/or cold sensation Muscle weakness
If neuropathy worsens, your provider may: Adjust your treatment plan
Massage area with cocoa butter regularly
Prescribe oral or topical pain medication
Neuroprotective Supplements
Suggest physical therapy
•
i.e., B-complex vitamins (B1, B6, B12)
Safe environment: rugs, furnishings, shoes
Nerve damage from neuropathy can be permanent. Early reporting of symptoms may prevent worsening symptoms. Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Tariman, et al. CJON.2008;12(3)suppl:29-36. Zhao T, et al. Molecules. 2022;27(12):3909.
9 1
Blood Clots: Managing DVT and PE Risk Blood clots can cause swelling, pain, discoloration (DVT), Starting Your Trek
shortness of breath, chest pain, sense of doom (PE). HCPs may manage DVT/PE risk by •
Adjusting medications and schedules
•
Prescribing blood-thinning medications according to assessed risk (DOAC, aspirin, warfarin, heparin)
•
Balancing the risk of DVT and PE with that of bleeding with low platelets
Additional strategies to reduce risk of clots: •
Anti-embolism stockings (elastic stockings)
•
Exercise regimen
•
Moving frequently when sitting long periods
•
Travel precautions (foot/leg exercises, walking, aspirin if not already on blood thinner)
Blood clots are serious and can be life threatening.
You may be at risk: • Family History • Obesity • Immobility • Smoking • Surgery
DOAC = direct oral anticoagulant; HCP = health care provider; DVT=deep vein thrombosis; PE=pulmonary embolism Rome, S, et al. Clin J Oncol Nurs. 2008;12(3)suppl:37-52. Faiman B. Clin J Oncol Nurs. 2016;20(4):E100-E105. De Stefano, et al. Hematologica, 2022
92 9 2
Consolidatio n
Stem Cell Transplant TRANSPLANT
Measuring treatment response Testing for Eligibility Insurance authorization Collecting stem cells
HD-Melphalan Stem cell infusion Supportive Care • GI Management • Transfusions • Antibiotics Hair Loss Engraftment
Duration: Approximately 2 weeks Location: Transplant Center
9 3
Duration: Approx. 3-4 weeks Location: Transplant Center
POST-TRANSPLANT
PHASE 3
ELGIBILITY
PHASE 2
PHASE 1
Starting Your Trek
Restrengthening Appetite recovery “Day 100” assessment Begin maintenance therapy Duration: Approximately 1012 weeks Location: HOME
Stem cell transplant after induction remains the standard of care for eligible patients Miceli T and Steinbach, M. Multiple Myeloma: A Textbook for Nurses. 2021. NCCN Guidelines. Multiple Myeloma V4.2026. Accessed December 22, 2025.
9 3
GI Symptoms: Prevention & Management Starting Your Trek
Fluid intake can help with both diarrhea and constipation and helps kidney function
Constipation is more
common in the induction phase Opioid pain relievers, antidepressants, heart or blood pressure medications (check with provider, pharmacist) Supplements: Calcium, Iron, vitamin D (rarely), vitamin B-12 deficiency Increase fiber Stay well hydrated Fruits, vegetables, high fiber whole grain foods Fiber binding agents – Metamucil®, Citrucel®, Benefiber®
Anorexia, the inability
to eat, is common during transplant and resolves with time. • Hydration is most important • Small, frequent meals with a
focus on protein intake • You will work closely with a dietician to help monitor your calorie intake
Diarrhea is common during transplant and long-term maintenance therapy.
Other medications and supplements can cause GI issues. Hydration is very important Electrolyte replacement is common Good skin care will help prevent irritation Stool exam may be needed to rule-out infection If no infection, anti-diarrheal medication may be prescribed
Discuss GI issues with healthcare providers to identify causes and adjust medications and supplements Smith LC, et al. Clin J Oncol Nurs. 2008;12(3)suppl:37-52. Faiman B. Clin J Oncol Nurs. 2016;20(4):E100-E105.
9 4
Changing Course: Treatment at Relapse
95
CAR T and Bispecific Antibodies: Known Side Effects Changing Course
9 8
CYTOKINE RELEASE SYNDROME (CRS)
ICANS AND NEUROTOXICITY
• Fever • Fatigue & Weakness CRS is a common • Headache • Nausea/Vomiting/Diarrhea but typically mild & manageable • Chills side effect • Low blood pressure • Rapid heart rate • Difficulty breathing
• Headache
PREVENTION AND MANAGEMENT of CRS • Disease management to reduce tumor burden • Bispecific Step-up Dosing (SUD) • Tocilizumab • Steroids • Anti-Seizure medications • Close monitoring
• Aphasia (difficulty with speech, reading, writing, or understanding language)
• Difficulty concentrating • Lethargy • Agitation • Hallucinations • Tremors
Neurotoxicity is a rare but serious side effect
• Confusion • Memory loss
• Personality change • Delayed Neurotoxicity can include Parkinsonism, Cranial Nerve Palsies and Peripheral Neuropathy/Guillan Barré syndrome (GBS)
CAR = chimeric antigen receptor. ICANS = Immune Effector Cell-Associated Neurotoxicity Syndrome
Brudno JN, Kochenderfer JN. Blood. 2016;127(26):3321-3330. Lee DW, et al. Biol Blood Marrow Transplant. 2019;25:625-638. Kumar, et al. Blood (2024) 144 (Supplement 1): 4758.
9 8
Infection: Medications Can Reduce Risk Changing Course
Type of Infection Risk
Medication Recommendation(s) for Healthcare Team Consideration
Viral: Herpes Simplex (HSV/VZV); CMV
Acyclovir prophylaxis
Bacterial: blood, pneumonia, and urinary tract infection
Consider prophylaxis with levofloxacin
PJP (P. jirovecii pneumonia)
Consider prophylaxis with trimethoprim-sulfamethoxazole (Bactrim)
Fungal infections
Consider prophylaxis with fluconazole
COVID-19 and Influenza
Antiviral therapy if exposed or positive for covid per institution recommendations
IgG < 400 mg/dL (general infection risk)
IVIg recommended for patients receiving CAR T or TCE therapies
ANC < 1000 cells/μL (general infection risk)
Consider G-CSF 2 or 3 times/wk (or as frequently as needed) to maintain ANC > 1000 cells/μL and maintain treatment dose intensity
Some people receiving BCMA-targeting therapies have experienced infections that are less common like CMV, PJP and fungal infections 9 9
ANC = absolute neutrophil count; BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; CMV, cytomegalovirus; GCSF = granulocyte colony-stimulating factor; HSV = herpes simplex virus; IVIg = intravenous immunoglobulin; PJP = Pneumocystis jirovecii pneumonia; VZV = varicella zoster virus. Raje NS, et al. Lancet Haematol.2022;9(2):143–161.
9 9
Management of Oral Side Effects Changing Course
Xerostomia= Dry Mouth OTC dry mouth rinse, gel, spray are recommended. Avoid hot beverages. Anti-fungal therapy for oral thrush.
Dysgeusi = Taste Change a Dexamethasone oral solutions “swish and spit” may provide benefit. Sour citrus or candies before meals are also recommended.
Dysphagia = Difficulty Dietary Swallowing modifications with small
bites, eating upright, and sips with food can help manage symptoms
Weight Monitoring Some medications lead to weight gain, others to weight loss. Meet with a nutritionist Consider diet changes, supplements
Dental Care Attention to oral hygiene. Regular dental cleaning and evaluation. Close monitoring for ONJ, oral cancer and dental caries 1 0 0
Work closely with your entire health care team to manage oral side effects.
ONJ = Osteonecrosis of the Jaw; OTC = Over The Counter Catamero D, Purcell K, Ray C, et al. Presented at the 20th International Myeloma Society (IMS) Annual Meeting Nurse Symposium; September 27–30, 2023; Athens, Greece.
1 0
Management of Skin and Nail Side Effects Changing Course
Possible side effect to some treatments and supportive care medications Skin Rash
Prevent dry skin; apply lotion Report changes to your care team Medication interruption or alternative, as needed Steroids: • Topical for grades 1-2, • Systemic and topical for Grade 3 Anti-histamines, as needed
Nail Changes Keep your nails short and clean. Watch for “catching and tearing” Apply a heavy moisturizer like Vaseline or salve. Wear cotton hand coverings to bed A nail hardener may help with thinning 1 0 1
Tell the team if you have signs of a fungal infection, like thickened or discolored nails Photos: Mount Sinai Hospital, NY, NY Nurse Leadership Board
1 0
Fatigue, Anxiety and Depression Changing Course
Fatigue
98.8% Anxiety
>35%
Fatigue is the most reported symptom. Sources include anemia, pain, reduced activity, insomnia, treatment toxicity, bone marrow suppression. Symptoms are under-reported: “I mentioned it before. Nothing can be done.” “I don’t want to be put on another medication.”
Join a support group! https://www.myeloma.org/support-groups
Depression
≈25%
Symptoms can improve with continued physical activity.
Talk to your healthcare team if you have thoughts of self-harm. Support is available. Rosenthaler C, Kane P, Gao W Eur J Haematol. 2016; Mondy, et al., Blood, 2024 Abstract 3771; Chang D. et al., Blood 2024, Abstract 2287.
1 0
Staying on Trek: Living Well with Myeloma
103
What kind of tests should you expect? There are several tests you can expect: Blood Urine Bone Imaging Bone Marrow Biopsy
Ask your provider how often these need to be done Monthly, every 1, 3, 6 months or annually
Know who is responsible for ordering and monitoring these tests (community or academic center)
Monoclonal Protein — M Spike Normal SPEP with normal polyclonal antibodies
SPEP with an abnormal monoclonal antibody or M Spike
M Spike
We all have polyclonal antibodies. We should NEVER have a monoclonal antibody! When we treat myeloma, we want the level of the abnormal monoclonal protein to decrease We all have kappa and lambda light chains, but not at high levels When we treat myeloma, we want the level of the light chains to be within their normal ranges
How Patients With Myeloma Relapse Myeloma protein
No symptoms, “Biochemical” Relapse
New symptoms, “Symptomatic”
•
•
New, worsening bone pain
•
Increasing fatigue, anemia
•
Next step: relapse workup; many therapy choices
Sequentially rising myeloma protein or free light chain (>25% increase from low point) No other symptoms Decisions: if, when, how to treat
• • •
Noonan K, et al. J Adv Pract Oncol. 2022;13(Suppl 4):15-21. Faiman B, et al. J Adv Pract Oncol. 2016:7(suppl 1):17-29. Kurtin S, et al. J Adv Pract Oncol. 2016;7(suppl 1):59-70. Gerber L. Nursing. 2018;48(4):55-58.
IMWG Response and Relapse Criteria Assessment: How Well is Treatment Is Working? CR Complete Remissoin
CR: myeloma protein undetectable in serum or urine no more than 5% plasma cells in bone marrow; no new lytic lesions; plasmacytomas resolved
VGPR Very Good Partial Remission
90% reduction in myeloma protein
PR Partial Remission
At least 50% reduction in myeloma protein
Know:
Order labs regularly Know who is monitoring (local or referral center)
Monitor for relapse
– CRAB symptoms OR increase of 25% in M protein from the lowest point
PD Progressive Disease CR = complete response; CRAB = calcium elevation, renal dysfunction, anemia, bone lesions; IMWG = International Myeloma Working Group; Mprotein = monoclonal protein; MR = minimal response (only in relapsed); MRD = minimal residual disease; PD = progressive disease; PR = partial response; sCR= stringent complete response; SD = stable disease; VGPR = very good partial response. Palumbo A, et al; International Myeloma Working Group. J Clin Oncol. 2014;32:587-600. Durie BM, et al; International Myeloma Working Group. Leukemia. 2006;20(9):14671473. Kumar S, et al. Lancet Oncol. 2016;17(8):e328-e346.
Healthy Practices to Sustain Your Trek Living Well
Adopt Healthy Behaviors • Mental health / social engagement • Stress reduction; relaxation • Sufficient Sleep • Maintain a healthy weight; eat nutritiously • Activity / exercise / prevent falls, injury • Stop smoking • Sexual health / intimacy • Complementary or alternative therapy • Socializing, Staying connected
Have a PCP for general check ups, preventative care, health screenings, vaccinations
Have specialists for dental care, eye exams/screening, skin cancer screening 1 0 8
Recommended Health Screenings Blood pressure Cholesterol Cardiovascular disease Colonoscopy Dental checkups & cleaning Dermatologic evaluation Diabetes Hepatitis Hearing Vision Women specific: mammogram, pap smear
Men specific: prostate
Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Dimopoulous M, et al. Leukemia. 2009;23(9):1545-56. Brigle K, et al. CJON. 2017;21(5)suppl:60-76. Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Faiman B, et al. CJON. 2011;15suppl:66-76. Miceli TS, et al. CJON. 2011;15(4)suppl:9-23.
1 0
Don’t Hike Alone: Care Partners Living Well
Multiple studies demonstrate that strong social ties are associated with • Increased longevity, including people with cancer • Improved adherence to medical treatment leading to improved health outcomes • Lower risk of cardiovascular diseases • Increased sense of purpose & life satisfaction • Improved mood and happiness • Reduced stress and anxiety • Enhanced resilience
Caring for the care partner • • •
Recognize that caregiving is difficult and stressful Encourage care partners to maintain their health, interests, and friendships The IMF has information and resources to help care partners
Care partners may help with medical appointments, managing medication, daily living, physical assistance, emotional support, myeloma knowledge, healthy lifestyle, patient advocacy, financial decisions
1 0 9
Care partners can be a spouse, close relative, a network of people (family, friends, neighbors, church members, etc) Martino J, et al. Am J of Lifestyle Med. 2015;11(6):466-475. Yang YC, et al. Proc Natl Acad Sci U S A. 2016;113(3):578-583. Pinquart M and Duberstein PR. Crit Rev Oncol Hematol. 2010; 75(2):122–137.
IMF Tip Cards 1 0
Navigate with Confidence: IMF Resources
Website: http://myeloma.org
IMF InfoLine 1-800-452-CURE 9am to 4pm PST Download or order at myeloma.org
You are not alone!
IMF Videos
AI-powered Q&A 24/7 in multiple languages 1 1
“THANK YOU!” FROM THE NLB AND THE IMF
PANEL Q&A TO FOLLOW
CLOSING THE GAP: HEALTH DISPARITIES IN MYELOMA Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor
What are Health Disparities? Health disparities are preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations - Centers for Disease Control (CDC) Health equity generally refers to individuals achieving their highest level of health through the elimination of disparities in health and health care
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
What are the DRIVERS of Disparities in MM? 1. Systemic racism 2. The Healthcare system 3. Social Determinants of Health 4. Biology of the disease and concomitant comorbidities 5. Delayed Diagnosis 6. Access to Care – Triplets, Transplants, Trials and CAR T 7. Lack of diversity, cultural sensitivity and optimal communication in healthcare professionals © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
A Call to Action Facts About Disparities in Myeloma 1. A Black Man or Woman is expected to live HALF as long as a same aged White Man or Woman 2. Myeloma is TWICE as common in African Americans 3. African Americans and Latino Americans are about 5-6 years younger at diagnosis 4. There is a longer time from symptoms to diagnosis among African Americans and Latino Americans 5. African Americans and Latino Americans are less likely to receive life saving therapies - the FOUR T’s: Transplant, Triplets, Trials and CAR Ts 6. African Americans are actually LESS likely to have high risk myeloma 7. African Americans can achieve equal or better outcomes when they receive therapy
M-Power = Myeloma Power The core vision of this initiative is to improve the short- and long-term outcomes for African American patients with myeloma. We want to empower patients and communities to change the course of myeloma…
ENGAGE
M-Power ENHANCE
Enhance access to optimal care by educating myeloma providers about the disparity and how to reduce it
You can learn more at mpower.myeloma.org 1
Engage the community to increase awareness and provide support
EDUCATE
Shorten the time to diagnosis by educating primary care providers to recognize the disease and order the right tests
M-Power Is Both a National and Local Movement National Efforts
Local Efforts
NC
Collaborate with key Stakeholders
MD
GA
Grand Rounds Community Workshops
NY
VA
MI
FL
ID
PCP Postcards
Free CE course for PCPs
Free CE course for Nurses
Social Media Campaigns
Educational Postcards
Publications
Mentorship of Medical Students Facebook Live
Community events
118
Juneteenth 2026 - Harlem
Multiple Myeloma Diagnosis Can Be Challenging
Fatigue © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Bone Pain
Anemia Kyle RA. Mayo Clin Proc. 2003;78:21-33.
Different Specialists See and Diagnose MM Patients 1. Kariyawasan CC, et al. QJM. 2007;100:635-640. 2. Hossain M, et al. An in depth analysis of factors contributing to diagnostic delay in myeloma: a retrospective UK study of patients journey from primary care to specialist secondary care. Blood. 2021;138(suppl 1):3007. Other Physician Emergency Care
Hematologist Oncologist
Primary Care/ Internal Medicine
Nephrologist Orthopedic Rheumatologist Neurologist
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
Typical diagnostic intervals1 Hematology/Oncology: < 3 months Primary Care: > 6 months The average patient will see their PCP THREE times with signs and symptoms of MM before the diagnosis is suspected!2
Education of Primary Care Providers Our goal is to reduce DELAYS in diagnosis among African Americans by educating the primary care community with a focus on: • Recognizing the signs and symptoms of myeloma • Discriminating myeloma from other diagnoses such as diabetes • Capturing an accurate diagnosis through proper use of testing • Providing referral guidelines for Hematology and Oncology 00 •
Grand Rounds
•
Postcards mailed to 6,000+ PCPs in target cities
•
Free PCP CME course “Don’t Miss Myeloma”
•
Cobb Institute talk
•
Talk at NMA Annual Meeting
•
Dinner Meetings
•
Articles and pending publications
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
8,0 ers n r a e L
2026 Mentor / Mentee Cohort MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
Louis S. Williams, MD
Afua Ofori-Darko
Nisha Joseph, MD
Alaura Cunningham
Cesar Rodriguez, MD
Bobbi Cooke
Saad Usmani, MD
Brianna Ali
Taussig Cancer Center, Cleveland Clinic Foundation
Case Western Reserve University School of Medicine
Emory Winship Cancer Center
Morehouse School of Medicine
The Tisch Cancer Institute Icahn School of Medicine at Mount Sinai
Howard University College of Medicine
Memorial Sloan Kettering Cancer Center
Touro College of Osteopathic Medicine (Harlem)
MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
Emeka Uzoka, MD
Brianna Watson
Sikander Ailawadhi, MD
Isaiah Delane-Vir Hoffman
Tondre Buck, MD
Jonathan Hayden Low
Dickran Kazandjian, MD
Josianne Fils
Advocate Health Care
Howard University College of Medicine
Mayo Clinic, Florida
Charles R. Drew University of Medicine and Science
Spartanburg Medical Center; Gibbs Cancer Center & Research Institute
Meharry Medical College
University of Miami; Miller School of Medicine
PCOM South Georgia
MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
MENTOR
MENTEE
Craig Cole, MD
Justin Hyde
Racquel Innis-Shelton, MD
Kiersten Sydnor
Caitlin Costello, MD
Matthew D. Gregory
Manisha Bhutani, MD
Rebecca Metellus
Michigan State University
Georgetown University School of Medicine
Alabama Oncology
Tulane
University of California, San Diego
University of California Irvine
Atrium Health Levine Cancer Institute
Geisinger Commonwealth School of Medicine
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
124
4th Annual Medical Student Scholars Program • Held at the Annual Meeting of the National Medical Association July 2026 in San Juan, Puerto Rico • Students presented posters, they worked on with a multiple myeloma experts immediately following the Jane Cooke Wright Symposium • 2 students delivered oral presentations at a Special Session
Over 750,000 visits to M-Power site!
M-Power Website
Patient Interview On Local News
126
Diversity in Clinical Trials Program Objective: To promote trust and educate patients regarding clinical trials, particularly those from populations underserved by clinical trials, laying the groundwork for potential future trial participation
Conclusions • Health disparities are sadly prevalent across all diseases, but particularly in multiple myeloma in the Black community • KNOW the signs/symptoms of myeloma – Fatigue, Pain and Anemia • If you know someone with myeloma, we are here for you! • The IMF’s M-Power is designed to reduce the inequity by ENGAGING the community, EDUCATING primary care providers and ENHANCING the care of patients with myeloma...
What Can I Do?? •Be more conscious of the topics of health equity •Evaluate the opportunities in your experience to reduce disparities •Support the M-Power movement!
mpower.myeloma.org
Resources to Advance Myeloma Care and Health Equity
mpower.myeloma.org
myeloma.org
BREAKOUT SESSION 2
PLEASE HEAD TO YOUR SELECTED BREAKOUT SESSION: BREAKOUT A: PATIENTS ONLY – LESSONS LEARNED Please remain in the room BREAKOUT B: CARE PARTNERS ONLY Please move to Ballroom A
BREAKOUT A: PATIENTS ONLY – LESSONS LEARNED
Stronger Together:
Patient CoMMunity Conversation Todd Kennedy
City of Hope / IMF Support Group Leader Myeloma Patient and Research Advocate
International Myeloma Foundation Los Angeles Patient and Family Seminar August 2026
SESSION GOAL
Create a safe, energizing space where patients can learn from each other, surface shared challenges, and leave with practical insights and more hope.
Lived Expertise – All of you! How many years since your diagnosis?
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
135
Our Myeloma (“Our”eloma) Journey Diagnosed December 26, 2017 Kappa Light Chains 173mg/dL (100x normal) 889,000 myeloma cells per million
Induction January to June 2018 Stem Cell Transplant June 2018 Consolidation Fall 2018 Maintenance ongoing Complete Response November 2018 Kappa Light Chains normal range MRD low and stable
Celebrating 8+ years!
The Highlight Reel
June 2019 March 2018
March 2019
June 2022 October 2022
May 2022
February 2026
Born June 11, 2026
MANY DIFFERENT PATHS: SHARED DECISION MAKING • NCCN Guideline Options:
• Frontline: 25 • Maintenance: 6 • Relapse after 1-3 Lines of Therapy: 47 • Relapse after 3+ Lines of Therapy: 16
• Over 500 active multiple myeloma clinical trials in US • There are thousands of possible patient variables • High-Risk y/n • BCMA Exposed y/n • Rapid Rise y/n 138
MANY DIMENSIONS OF THE MYELOMA JOURNEY
139
How long will I live?
Stress
Family
Depression
Bargaining
Labs
Pain Clinical Trials
Denial
Doctor Visits
Grief
Depression
Stress
Hope
Labs Grief
Fea r
Anger Imaging Worry
Fear Side effects Doctor Visits
What is myeloma?
Labs Hope Disability
Nausea
Will I live?
Fatigue
Depression
Anger
Imaging
Doctor Visits
Depression
Insurance
Work
Labs
Insomnia
Nausea Anger Overwhelmed Treatment Fatigue Bone Marrow Biopsy Will this bankrupt me?
How did I get this?
Anger
Myeloma Specialist
Needles
Hope
Sadness Anxiety Doctor Visits Friends SCT Consult Labs Why me?
Fear
Why did I get this?
Hope
Sadness Stress WorryMedical Travel
Denial Pain Grief How will we endure? Diarrhea Doctor Visits Worry
Depression
I am not alone! Doctor Visits Denial
Infusions
Friends Bone Marrow Biopsy
Connected
Side effects
Myeloma Bargaining Specialist Courage
Trials
Family Sadness
Doctor Peace Denial Silver linings Doctor Visits Labs Empowered Research Advocate Faith Visits Fear Research Labs Supported Strength Insurance Labs Fatigue Depression Encouraged Faith Denial Work Anger Hope Anger What is myeloma? Doctor Visits Doctor Visits Family
Hope
Empowered CAR-T Courage Anxiety Labs Depression Coworkers Fear Why me? Fatigue Labs Motivated Friends Determined Enduring Supported Injections Pain Sadness Work Clinical Trials
Resilient
Labs
Confidence Doctor Visits
Doctor Visits
Family
Hope
Disability
Medical Travel
LET’S DISCUSS Newly diagnosed stage (MGUS, SMM, MM) •
What are the most significant challenges at this stage? (Physical, emotional, financial, relational, scientific, spiritual)
•
What practical actions can make daily life easier?
•
Who/what helped you and your loved ones move towards less fear and more hope?
•
What advice would you give someone diagnosed today?
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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LET’S DISCUSS In remission (On or off treatment) •
Has your relationship changed with myeloma during remission? How?
•
How do you stay informed without being overwhelmed?
•
How do you manage the potential fear of relapse?
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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LET’S DISCUSS In relapse (first relapse, later relapses) •
What are the most significant challenges during first relapse? Later relapses?
•
What tips can you share that may make daily life easier?
•
How do you evaluate treatment options, including clinical trials?
•
How do you move toward less fear and sustained hope during challenging times?
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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TREE OF HOPE: PATIENTS • Science • Faith • Finding Joy • Community • Giving Back
Susan Dunnett, PhD Professor University of Edinburgh Business School
TREE OF HOPE: CARE PARTNER S • Science • Faith • Finding Joy • Community • Giving Back Susan Dunnett, PhD Professor
CLOSING REFLECTIONS
What is one thing you are taking from this
conversation?
What is one thing you would like someone else in this
room to remember?
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TOGETHER, WE ARE A STRONGER COMMUNITY.
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CONTROVERSIES IN MYELOMA: MODERATED BY DR. JOSEPH MIKHAEL Sarah Lee, MD City of Hope, Duarte, CA Tara Gregory, MD Colorado Blood Cancer Institute, Denver, CO Robert Vescio, MD Cedars Sinai, Los Angeles, CA
ASK THE EXPERTS W/ GUEST FACULTY
CLOSING REMARKS & EVALUATION
SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from Friday & Saturday Programming • Evaluations for Friday & Saturday Programming • SparkCures Search Engine specific for the California region • Ways to Give • IMF Website © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
152
THANK YOU TO OUR SPONSORS!
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OUR MISSION:
Improving the quality of life of myeloma patients while working toward prevention and a cure.
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease.
© 2026, International Myeloma Foundation. All rights reserved. IMF Confidential
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