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WELCOME TO THE PORTLAND MYELOMA COMMUNITY WORKSHOP SATURDAY, SEPTEMBER 19, 2026

THANK YOU TO OUR SPONSORS!

MORNING AGENDA 9:00 – 9:15AM

Welcome & Introductions

9:15 – 9:45AM

Understanding Myeloma Basics

9:45 – 10:00AM Myeloma

(Video) Closing the Gap: Health Disparities in

10:00 – 10:15AM

Advancing Treatment Options Through Clinical Trials

10:15 – 10:45AM

Q&A with Panel

10:45 – 11:00AM

Coffee Break

11:00 – 12:00PM

Breakout: Treating Myeloma - Managing Relapsed Myeloma - Newly Diagnosed Frontline Therapy

12:00 - 12:40PM

LUNCH 3

AFTERNOON AGENDA 12:40 – 1:25PM Together

Myeloma: Putting the pieces of the Puzzle

1:25 – 1:55PM Partner

Living the Myeloma Life: Local Patient & Care

1:55 – 2:20PM your

The Unseen Impact of Myeloma: Taking Care of Emotional Health

2:20 – 3:05PM

Q&A with Panel

3:05 – 3:15 PM

Closing Remarks

3:15 – 3:30PM

Coffee & Network 4

SCAN THIS QR CODE FOR KEY IMF RESOURCES Helpful Links to: • Slides from today’s programming • Evaluations for this program • SparkCures Search Engine specific for the Detroit region • Ways to Give

OUR MISSION Improving the quality of life of myeloma patients while working toward prevention & a cure

SHARED EXPERIENCES BECOME SHARED STRENGTH! Support Groups empower patients & care partners with information, insight & hope The IMF provides educational support to a network of over 155 myeloma specific groups and over 200 Group Visits/Year

SGTeam@myeloma.or g

MEET THE SUPPORT GROUP TEAM!

Robin Tuohy

Becky Bosley

Vice President, Patient Support

• •

25+ Year Care Partner Advocate

Jennifer Wieworka

Senior Director, Support Groups

Director, Support Groups

Yara William

Katie Atkins

Cecilia Romero

Associate Director, Support Groups

Project & Technology Manager, Support Groups

•

Oncology Nurse

•

Oncology Social Worker

•

Breast & Ovarian Cancer Survivor

Doctor of Public Health

•

Doctorate – Prepared Nurse

Public Health Advocate

•

Clinical Nurse Specialist

•

Community Engager

•

Resource Navigator

•

Technology Educator

LOCAL SUPPORT GROUPS

• Portland

SHARED EXPERIENCE GROUPS MM Families For patients & care partners with young children

Las Voces de Mieloma For Spanish Speaker patients & care partners

Living Solo & Strong For patients without a care partner

Care Partners Only For myeloma care partners only

Veterans SIG For those who served our country

Smolder Bolder For smoldering myeloma patients & care partners

MM in the Middle For those diagnosed before age 50

Living with High-Risk Multiple Myeloma For high-risk myeloma patients & care partners

EDUCATION – WRITTEN

MYELO

2026 PATIENT EDUCATION - US Patient & Family Seminars

Myeloma Community Workshops

•

Boca Raton, FL – March 13 – 14

•

Kansas City, MO – March 28

•

Cleveland, OH – May 1 – 2

•

Virtual – April 20 – Newly Diagnosed

•

Los Angeles, CA – August 14 – 15

•

Minneapolis, MN – April 25

•

Detroit, MI – June 27

•

Salt Lake City, UT – August 1

•

Virtual – August 24 - Relapsed

•

Portland, OR – September 19

•

San Diego, CA – October 24

•

Phoenix, AZ – November 14

•

Virtual – November 16 - Controversies

•

Short Hills, NJ – October 2 – 3

EDUCATION – AWARENESS - MAM

11.8 K Mentions

60M Reach

346.5K Interactions

September Is Blood Cancer Awareness Month

Visit KnowMyeloma.org to create a custom campaign graphic, share toolkit resources, and invite your community to learn, engage, and spread awareness throughout September. KnowMyeloma Facebook Live Series September 29 at 4pm PT | 7pm ET Q&A with Dr. Douglas Sborov

YOU ARE NOT ALONE

Understanding Myeloma Basics Gliceida María Galarza Fortuna, MD University of Utah, Huntsman Cancer Institute, Salt Lake City, UT

Understanding Myeloma Basics

How common is Myeloma in the US? Estimated New Cases in 2025

36,500

% of All New Cancer Cases

1.8%

Median Age At Diagnosis

69 years

How common is Myeloma?

Percent of New Cases by Age

https://seer.cancer.gov/statfacts/html/mulmy.html dated 4.18.2025

What Causes Myeloma? How/Why Did I Get This? Environmental Factors: • Exposure to some chemicals • Radiation exposure Examples:  Agent Orange  Burn pits  Pesticides, Herbicides  Firefighter/First Responder exposures

Individual Factors: • Age • Family History of related disorders • Personal History of MGUS or SMM • Obesity

VA Study Documents Health Risks for Burn Pit Exposures Leukemia and Multiple Myeloma Set to Be Added to List of Conditions Linked to Burn Pits © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

In most cases, the honest truth is ….. WE DON’T KNOW

The Connection Between Bone Marrow & Myeloma Hematopoietic stem cell

Red Blood Cells

White Blood cell

Platelets

Carry Oxygen

Fight Infection

Prevent Bleeding

Photo Credit

This Photo by Unknown Author is licensed under CC BY

Graphic Credit: Teresa Miceli

Understanding (Mono)clonal Plasma Cells

Heavy Chain = M-Spike  65% IgG – most common  20% IgA – associated with AL Amyloid  5% to 10% light chain-only (kappa, lambda)  Less common: IgD, IgE, IgM eGFR = estimated glomerular filtration rate; M-spike = monoclonal spike; Ig = Immunoglobulin

Image Credit: IMF Patient Handbook

Heavy Chain: G, A, M, D, E

• • • • • •

AL-Amyloid POEMS Light or Heavy Chain Deposition Disease MGCS = Clinical MGRS = Renal MGNS = Neuro

Is Myeloma the Only Protein Disorder?

(Monoclonal Gammopathy of Undetermined Significance)

SMM1-5,8

(Smoldering Multiple Myeloma)

Active Multiple Myeloma6-8

Clonal plasma cells in bone marrow

<10%

10%-60%

>10%

Presence of Myeloma Defining Events

None

Yes

Likelihood of progression

~1% per year

~10% per year

Not Applicable

Treatment

No; observation

Yes for high risk*; No for others

Yes

Condition

MGUS1-4

MGCS = clinical significance; MGRS = Renal significance; MGNS = Neuro significance

Multiple Myeloma and Myeloma Defining

Clonal Bone Marrow ≥ 10% Or Bony/Extramedullary Events Plasmacytoma AND any one or more Myeloma Defining Events (MDE) SLiM CRAB

C alcium elevation R enal complications A nemia B one disease

S Clonal BMPC ≥ 60% Li FLC ratio >100

>1 focal lesion* by MRI BMPC = Bone marrow plasma cells FLC = serum free light chain * >5 mm

Rajkumar SV, et al. Lancet Oncology. 2014; 15:e538-e548. Kyle RA, et al. Leukemia. 2010; 24(6):1121–1127.

Testing For Myeloma: Blood & Urine Test Name

What it means

CBC + differential Complete metabolic panel

Hemoglobin, WBC, Platelets Creatinine, Calcium, Albumin, Liver function

Beta-2 Microglobulin (B2M) Lactate Dehydrogenase (LDH)

Part of staging and risk stratification

Serum Immunofixation and Protein electrophoresis (SPEP+IFE) Immunoglobulins (G, A, M, D, E) Free light chain assay with kappa/lambda ratio

Measures the level of normal and clonal protein Identifies the type of clonal protein

Urine immunofixation & protein electrophoresis (UPEP+IFE)

Measures the level of normal and clonal protein Identifies the type of clonal protein

C R A B

This Photo by Unknown Author is licensed under CC BY-SA-NC

S Li M

CBC= Complete Blood Count; WBC = White Blood Cell

Testing For Myeloma: Imaging Imaging: – Skeletal survey: Series of X-rays; less sensitive than other techniques

– Whole body low dose (CTWB-LD CT ) – Positron Emission Tomography (PET/CT) – Magnetic Resonance Imaging (MRI)

S L i M

Healthy bone versus myeloma bone disease

C R A B

This Photo by Unknown Author is licensed under CC BY-NC-ND

Rajkumar SV, et al. Lancet Oncol. 2014;15:e538-3548. Ghobrial IM, et al. Blood. 2014;124:3380-3388; mSMART.org; NCCN.org

Testing For Myeloma: Bone Marrow This Photo by Unknown Author is licensed under CC BY-SA

Bone marrow genetics • Cytogenetics • Fluorescence in situ hybridization (FISH) • Next generation sequencing (NGS) High Risk FISH Results* Deletions

Translocations

Gain

1p17p- (p53del)

t(4;14) t(14;16) t(14;20)

1q+

Image Credit: IMF Patient Handbook

Bone marrow biopsy & aspirate • Bone marrow plasma cells (%) • Congo Red staining if concern for AL-Amyloid Rajkumar SV, et al. Lancet Oncol. 2014;15:e538-3548. IM,IMF et al. Blood. 2014;124:3380-3388; mSMART.org; NCCN.org © 2026, International Myeloma Foundation. All rightsGhobrial reserved. Confidential

*15-20% of people with NDMM

IMS/IMWG consensus on high-risk myeloma definition Del17p

in more than 20% of sorted plasma cells

TP53 mut

(no threshold VAF)

Biallelic Del(1p32)

t(4;14) or t(14;16) or t(14;20) 2 among

β2M ≥5.5mg/L

Gain/amp 1q Monoallelic del(1p32)

Avet-Loiseau et al. J Clin Oncol 2025

(if creat <1.2mg/dL)

What is the Myeloma Treatment Landscape? L O T # 1

Initial Therapy (a.k.a. Frontline, Induction) Quad Therapy (ex. CD38+ MoAb + VRd) HD-Melphalan + Stem Cell Transplant (ASCT)

O r

Consolidation Therapy

Maintenance LOT #2

Treatment for Relapse

LOT #3

Treatment for Relapse

LOT #4

Treatment for Relapse

LOT #5

Treatment for Relapse

LOT #6

Treatment for Relapse

Supportive Care and Living Well

Drug Class Overview Class

Drug Name

Abbreviation

IMiD immunomodulatory drug

Thalomid (thalidomide)

T or Thal

Revlimid (lenalidomide)

R, Rev, Len

Pomalyst (pomalidomide)

P or Pom

Velcade (bortezomib)

V or Vel or B

SC/SQ or IV

Kyprolis (carfilzomib)

C or K or Car

Ninlaro (ixazomib)

N or I

Oral

Cytoxan (cyclophosphamide)

C, CTX

Alkeran or Evomela (melphalan)

M or Mel

Oral IV

Decadron (dexamethasone)

Dex or D or d

Prednisone

P or Pred

Monoclonal Antibodies

Darzalex (daratumumab) Sarclisa (isatuximab) Empliciti (elotuzumab)

Dara Isa Elo

IV or SQ IV IV

XPO1 Inhibitors

Xpovio (selinexor)

X or Sel

Oral

Proteasome inhibitor

Chemotherapy

Steroids

Administration Oral (PO)

Oral IV

Drug Class Overview Class

Drug Name

Abbreviation

Administration

Peptide Drug Conjugate*

Pepaxto (Melphalan Flufenamide)

Melflufen

BCMA Targeted Antibody Drug Conjugate (ADC)

Blenrep (belantamab mafodotinblmf)

Bela, Belamaf, or B

Abecma (idecabtagene vicleucel)

Ide-cel

CAR T Cell therapy

Bispecific Antibodies

Pipeline

Carvykti (ciltacabtagene vicleucel) Tecvayli (teclistimab) Talvey (Talquetamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab

IV Cilta-cel Tec Talq Elra Linvo

SC/IV

Cevostamab, Iberdomide, Mezigdomide, Anito-cel, Venetoclax AZD0120, Etentamig, KLN-1010, Trispecifics …………………………… TO COME!

* This agents is currently off the market in the US but available through special programs SC or SQ = Subcutaneous, Under the skin; IV = Intravenous © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

Flow MRD negative*

sCR Response

Myeloma Cells & Protein

Measuring Disease Response: IMWG Response Criteria

Molecular CR CR

VGPR PR MR SD PD

Negative by next generation flow (NGF) (minimum sensitivity 1 in 10-5 nucleated cells or higher)*

mCR AND normal Free Light Chain ratio, Bone Marrow negative by flow, 2 measures CR AND negative PCR Complete Response: Negative immunofixation (IFE); no more than 5% plasma cells in BM; 2 measures Very Good Partial Response: 90% reduction in myeloma protein Partial Response: at least 50% reduction in myeloma protein Minimal Response Stable Disease: Not meeting above criteria Progressive Disease: At least 25% increase in identified myeloma protein from lowest level

MRD = Minimal Residual Disease sCR = Stringent Complete Response; BM = Bone Marrow Kumar, S., Paiva, B., Anderson, K. C., Durie, B., Landgren, O., Moreau, P., ... & Dimopoulos, M. (2016). International Myeloma Working Group consensus International Myeloma Foundation. All rights reserved. IMF Confidential criteria© for2026, response and minimal residual disease assessment in multiple myeloma. The lancet oncology, 17(8), e328-e346.

When Do I Need A New Treatment? • Not every relapse requires immediate therapy • Each case is different

Asymptomatic biochemical relapse on 2 consecutive assessments

Asymptomatic high-risk disease or rapid doubling time or extensive marrow involvement Consider Treatment Patient-/Disease-Specific Monitor Carefully

Consider Observation Monitor Carefully

Kumar et al. NCCN Guidelines. Multiple myeloma. V4.2018.

Symptomatic or extramedullary disease

Initiate Treatment

Targets on the Myeloma Cell Surface and Therapeutic AntibodiesBi-Specific Antibodies Bi-Specific Antibodies Talvey (Talquetamab) CAR-T

CAR-T

GPRC5D

FcRH5

SLAMF7

Monoclonal Antibodies Daratumumab and Darzalex Faspro Sarclisa (Isatuximab) TAK-079 MOR202

Antibody Drug Empliciti (Elotuzumab) Bi-Specific Antibodies

CD38

Immune Therapies Abecma (Ide-cel CAR-T) Carvykti (Cilta-cel CAR-T) Tecvayli (Teclistamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab) Other CAR-Ts Other Bi-Specific Antibodies

Antibody Drug Conjugates

How it works: An antibody directed at a target (BCMA) combined with a cytotoxic agent (chemotherapy) ADC = Antibody-Drug Conjugate BCMA = B-Cell Maturation Antigen ADCP/ADCC = Antibody-Dependent Cellular Cytotoxicity & Phagocytosis © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

Image Credit: https://creativecommons.org/licenses/by-nc/3.0/

Blenrep (belantamab mafodotin) combinations approved by UK MHRA in relapsed/refractory multiple myeloma. April 2025

Bispecific Antibodies: Mechanism of Action • Incorporates 2 antibody fragments to target and bind both tumor cells and T cells • Brings target-expressing MM cells and T cells into close proximity, enabling T cells to induce tumor-cell death

Targets of Bispecific Molecule Vary Tumor Cell Agent T-Cell Target Target

Teclistamab Elranatamab Linvoseltamab

BCMA

CD3

Talquetamab

GPRC5D

CD3

Cevostamab

FcRH5

CD3

“Off the Shelf” Advantage

ADC = Antibody-Drug Conjugate; BCMA = B-Cell Maturation Antigen; CD3 = Cluster of Differentiation 3; FcRH5 = Fc receptor-homolog 5; GPRC5D = G-protein coupled receptor family C group 5 member D © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

• No manufacturing process, unlike CAR T-cell therapy (but like ADC/belantamab therapy) • Thus, no delay between decision to treat and administration of drug

Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License: CC BY 4.0. Barilà G, et al. Pharmaceuticals (Basel). 2021;14(1):40.

The Process of CAR T Cell Therapy 1 CAR T therapy recommended. Insurance approved and ready to move forward.

Apheresis to collect T Cells

T Cells

ll e C n T usio f In

Bridging therapy, if needed; Lymphodepleting therapy when CAR T cells are ready

CAR Chimeric Antigen Receptor T Cell; LOT =reserved. Lines ofIMF Therapy © T= 2026, International Myeloma Foundation. All rights Confidential

Hucks G, Rheingold SR. Blood Cancer J. 2019;doi:10.1038/s41408-018-0164-6.

Close monitoring and Management of side effects

5 HOME!

What about Cure in Myeloma?

Defining “Cure” has many considerations:

We have historically called myeloma “incurable” as such a small fraction of patients remained in long term remission

Survival continues to improve in MM with an average over 10 years now!

https://seer.cancer.gov/statfacts/html/mulmy.html dated

 Elimination of disease, down to Minimal Residual Disease Negative (MRD-)  Prolonged deep response Off Therapy  A recent DRAFT definition is being considered:

The Evolution of Myeloma Therapy

Now

VD Rev/Dex CyBorD VTD VRD KRD D-VMP DRD

ASCT Tandem ASCT (?)

Front line treatment

Induction

New

D-VRD Isa-VRD D-KRD Isa-VRD

Consolidation

“More” induction?

Nothing Thalidomide? Bortezomib Ixazomib Lenalidomide Combinations

Idecabtagene autoleucel Ciltacabtagene autoleucel Teclistamab, Talquetamab Elranatamab, Linvoseltamab

Maintenance

Relapsed

Post Consolidation

Rescue

Daratumumab? Carfilzomib? Lenalidomide + PI

ASCT, autologous stem cell transplant; CAR, chimeric antigen receptor; Cy, cyclophosphamide; d- daratumumab; D/dex, dexamethasone; isa, isatuximab; K, carfilzomib; M, melphalan; PD-L1, programmed death ligand-1; PI, proteasome inhibitor; Rev, lenalidomide; V, bortezomib. Speaker’s own opinions.

Bortezomib Panobinostat Lenalidomide Daratumumab Carfilzomib Ixazomib Pomalidomide Elotuzumab Selinexor Isatuximab Belantamab mafodotin* Melphalan flufenamide*

CAR T Cell Therapy Bispecific/Tri-specific Antibodies Cell Modifying Agents Venetoclax PD/PDL-1 Inhibition? Small Molecules

* These agents are currently off the market but available through special programs

Anito-cel Cevostomab Iberdomide, Mezigdomide Sonrotoclax KLN-1010 AZD0120

Second/Expert Opinion • You have the right to get a second opinion. Insurance providers may require second opinions. • A second opinion can help you: – Confirm your diagnosis – Give you more information about options – Talk to other experts – Introduce you to clinical trials – Help you learn which health care team you’d like to work with, and which facility

Where can I learn more? Myeloma.org

https://seer.cancer.gov/statfacts/html/mulmy.html; dated 6.15.2024

Closing the Gap: Health Disparities in Myeloma Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO IMF Medical Advisor

Advancing Treatment Options Through Clinical Trials Rebecca Silbermann, MD, MMS Oregon Health & Science University, Portland, OR

Objectives •

Provide the rationale for clinical trials

•

Outline the phases of clinical trials

•

Discuss why a patient might participate in a trial

•

Highlight the role of the IMF in clinical trials

Clinical Trials - Overview Some Of The Important Principles Of Clinical Trials: •

Clinical research improves myeloma care for all patients

•

Research is under very tight supervision and standards

•

Open, clear communication between the physician and the patient is fundamental

Driving research forward!

What is Clinical Research? Medical research that involves individual patients.

• Trials that test new treatments New drugs or new combinations of drugs New devices or technology • Long-term natural history studies Provide valuable information on how disease and health progress over time.

Each clinical trial is written with the goal of answering a specific question: Examples:

Is the treatment safe for people? Is the treatment safe for people with myeloma? Is the treatment as good as another treatment? Is the treatment better than another treatment?

Clinical Trials – Why Me?? Benefits may include: 

Early access to “new” therapy



Access to new diagnostic testing



Contribution to medical science

Potential risks must be considered:



“Toxicity” of side effects



Lack of efficacy

Identify a target for therapy in the laboratory

Confirm the anticancer activity in laboratory and animal studies

Clinical trials (human studies) to determine safety, dosing and effectivenes s

Clinical Trial Phases Phase I: •

Is the new treatment safe?

Phase II: • Does the new treatment work? Phase III: • Is the treatment better than what is currently available?

Drug Development Timeline

Even Before Phase I Most agents are tested in lab models  In vitro: “myeloma cell lines

Next step is animal model  In vivo: (We are more like mice than you think!!)

Earliest studies in people are Phase I: “First in Human”  Often uses extremely low dose of drug to ensure safety

Phase 1 Clinical Trials: Is the drug safe? What is the best dose?

•All patients receive the experimental therapy •Patients get higher doses as the study continues •Determine side effects of new drugs or combinations •Explore how the drug is metabolized by the body

Phase 2 Clinical Trials

Does the new treatment work?

•

A Phase 1 study may be revised to include a Phase 2 component

•

Patients usually receive the experimental therapy

•

A study may include “arms” comparing different drug doses or drug combinations

Phase 3 Clinical Trials Is the treatment better than what is currently available? •

Highest form of clinical evidence

•

Typically enroll a large number of patients for FDA approval

•Participants receive the experimental therapy or the standard treatment o

Participants might be randomly assigned to a treatment

Sometimes the randomization is ‘blinded’: neither the physician nor the patient knows which treatment is given

Sometimes there might be a placebo arm

Clinical Trials: Benefits of Participation Possible Benefits: Patients will receive, at a minimum, the best standard treatment If the new treatment or intervention is proven to work, patients may be among the first to benefit Patients have a chance to help others and improve cancer care

Risks of Participation

New treatments or interventions under study are not always better than, or even as good as, standard care Even if a new treatment has benefits, it may not work for every patient Health insurance and managed care providers do not always cover clinical trials © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

Why Don’t more Patients Participate in Trials? Patients and their families may: • • • • • •

Be unaware of clinical trials Lack access to trials Fear, distrust, or be suspicious of research Have practical or personal obstacles Face insurance or cost problems Have a disconnect with their healthcare team

Diversity in Clinical Trials

“

People from racial and ethnic minorities and other diverse groups are underrepresented in clinical research. This is a concern because people of different ages, races, and ethnicities may react differently to certain medical products. – FDA

Leadership and commitment Community engagement practices

Investigator hiring, training, and mentoring practices

Patient engagement practices

US Cancer Centers of Excellence: Strategies for Increased Inclusion of Racial and Ethnic Minorities in Clinical Trials

FDA = US Food and Drug Administration. Regnante JM, et al. J Oncol Pract. 2019;15(4):e289-e299. FDA website. Clinical Trial Diversity. Accessed March 27, 2024. © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential https://www.fda.gov/consumers/minority-health-and-health-equity/clinical-trial-diversity.

Diversity in Clinical Trials Historically, myeloma clinical trials have not represented the diversity of the U.S. myeloma population. •

In the U.S., about 20% of myeloma patients are of African descent, but only 5%–8% of patients in myeloma trials are of African descent.

Barriers to clinical trial participation include: • • •

Structural racism Finances Mistrust

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

Is A Clinical Trial Right For Me? •

Ask your physician if you are eligible for a clinical trial

•

Discuss trial participation with your support system

•

Meet with the clinical research team to discuss the trial details

•

Carefully review the “Informed Consent”

•

Clinical Trials: Myths MYTH: If I participate in a clinical trial, I might get a placebo, not active treatment MYTH: If I participate in a clinical trial, I can’t change my mind

• Phase 1 and 2, everyone gets active treatment • Phase 3 standard of care vs new regimen: often standard regimen with/without additional agent in MM trials • Patients can withdraw their consent for clinical trial participation at any time

MYTH: Clinical trials are dangerous because they have new medicines and practices

• Some risk is involved with every treatment, but medicines are used in clinical trials with people only after they have gone through testing to indicate that the drug is likely to be safe and effective for human use

MYTH: Clinical trials are expensive and not covered by insurance

• Research costs are typically covered by the sponsoring company • Standard patient care costs are typically covered by insurance • Check with clinical trial team/insurers; costs such as transportation, hotel, etc may not be reimbursed and are paid by patient

PhRMA website. Accessed March 25, 2024. https://phrma.org/-/media/Project/PhRMA/PhRMA-Org/PhRMA-Org/PDF/A-C/CLINICAL-TRIALS-MYTH-FACT-PRINT.pdf?hsCtaTracking=f6689b95-1626-40d9-8c87-c6b © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential 8d31600a4%7C35221aa8-d487-4db3-9416-b9c3c35e3bac .

Resources Clinical Trials ResourcestotoFind Find Clinical Trials and Avoid Bias

IMF Infoline US & Canada: 800-452 CURE (2873) Worldwide: 1-818-487-7455 Clinicaltrials.gov

infoline@myeloma.org

https://clinicaltrials.gov/

Conclusions Clinical trials are a critical part of myeloma therapy Every patient should at least consider participation in a trial The IMF is deeply committed to improving access to clinical trials The IMF continues to expand its work in clinical trials – STAY TUNED!

Q&A WITH GUEST PANEL

Managing Relapsed Multiple Myeloma Rebecca Silbermann, MD, MMS Oregon Health & Science University, Portland, OR

 Discuss WHY relapses occur  Review important principles

for selecting treatment for relapsed myeloma

OBJECTIVES

 Empower patients to engage

in the decision-making process

 Encourage patients to know

there are MANY options for relapsed myeloma

Myeloma almost always relapses ASYMPTOMATIC

M-Protein g/L

SYMPTOMATIC

REFRACTORY RELAPSE

ACTIVE MYELOMA RELAPSE

Clone 1.1 Clone 1.2 Clone 2.1 Clone 2.2 Misc

MGUS or SMOLDERING MYELOMA

2 PLATEAU REMISSION

Time Therapy

MGUS = monoclonal gammopathy of undetermined significance Adapted from Dr. Brian Durie and Keats JJ, et al. Blood. 2012;120:1067-1076.

Why does Myeloma Relapse? •

It is never fully cleared Measurable Residual Disease (MRD) negativity is not the same as cure

•

The immune system cannot contain the disease Remember myeloma is a disease of the plasma cell

Many Treatment Options at Relapse Myeloma Therapies Belantamab mafodotinb

Common Combinations Bela, BVd, BPd, BKRd

Bortezomib (SQ admin)

VRd, Vd, VCd

Carfilzomib

KRd, Kd, Dara-Kd, Isa-Kd

Ciltacabtagene Autoleucel

Cilta-Cel

Daratumumab

Dara-Rd, Dara-Vd, Dara-Pd, Dara-VMp, Dara-Kd

Elotuzumab

ERd, EPda

Idecabtagene Vicleucela

Ide-Cel

Isatuximab

Isa-Pda, Isa-Kd

Click to edit Master textIRd styles Ixazomib • Second level Lenalidomide

VRd, Rd, KRd, Dara-Rd, ERd, IRd

– Third a level Pomalidomide

Pda, Dara-Pd, EPda, PCdb



7 3

Fourth level

Selinexor Xd, XVd, XKdb, Dara-Xdb Fifth level Teclistamab, Talquetamab, Teclistamab and Daratumumab Elranatamab, Linvoseltamab New agents or regimens in clinical trials are always an option

Many treatment options are available. More therapies are being studied Clinical trials may be an option

Factors to consider when choosing the next Disease factors treatment

Presence of high-risk disease features at diagnosis Presence of high-risk disease factors at relapse

Biochemical versus clinical relapse

Patient factors Access to academic center/clinical trials

Patient priorities/goal s

Relapsed Multiple Myeloma Other medical conditions Durability of prior response

Tolerability of prior therapies 74

Key Principles of Treatment Selection 1. Change the mechanism of action 2. Don’t save the best for last! 3. Consider newer immunotherapies: CAR-T Cell

Therapy and Bispecific Antibodies

4. Depth of Response Matters 5. Sequencing is important but not fully understood 6. Always discuss care goals and quality-of-life

1. Change the mechanism of action •

When myeloma relapses, it “overcomes” the current therapy

•

Ideally, the next treatment should treat the disease differently Example: It may not make sense to change a patient from one CD38 monoclonal antibody (daratumumab) to another (isatuximab)

Drug Class Overview Class

Drug Name

Abbreviation

IMiD immunomodulatory drug

Thalomid (thalidomide)

T or Thal

Revlimid (lenalidomide)

R, Rev, Len

Administration

Oral (PO)

Pomalyst (pomalidomide)

P or Pom

Zenbexus* (iberdomide) Velcade (bortezomib)

V or Vel or B

SC/SQ or IV

Kyprolis (carfilzomib)

C or K or Car

Ninlaro (ixazomib)

N or I

Oral

Cytoxan (cyclophosphamide)

C, CTX

Alkeran or Evomela (melphalan)

M or Mel

Oral IV

Decadron (dexamethasone)

Dex or D or d

Prednisone

P or Pred

Monoclonal Antibodies

Darzalex (daratumumab) Sarclisa (isatuximab) Empliciti (elotuzumab)

Dara Isa Elo

IV or SQ IV IV

XPO1 Inhibitors

Xpovio (selinexor)

X or Sel

Oral

Proteasome inhibitor

Chemotherapy Steroids

SC or SQ = Subcutaneous, Under the skin; IV = Intravenous

Oral IV

Drug Class Overview Class

Drug Name

Abbreviation

Administration

Peptide Drug Conjugate*

Pepaxto (Melphalan Flufenamide)

Melflufen

BCMA Targeted Antibody Drug Conjugate (ADC)

Blenrep (belantamab mafodotinblmf)

Bela, Belamaf, or B

CAR T Cell therapy

Bispecific Antibodies Pipeline

Abecma (idecabtagene vicleucel)

Ide-cel IV

Carvykti (ciltacabtagene vicleucel)

Cilta-cel

Tecvayli (teclistimab) Talvey (Talquetamab) Elrexfio (Elranatamab) Lynozyfic (Linvoseltamab

Tec Talq Elra Linvo

Cevostamab, Mezigdomide, Anito-cel, Venetoclax AZD0120, Etentamig, KLN-1010, Trispecifics ……………………………

SC/IV

MORE TO COME!

* This agents is currently off the market in the US but available through special programs

2. Don’t Save the Best for Last! •

Typically, the most durable remissions occur earlier in the disease course.

•

So, we want to use the best possible therapies before the disease becomes more resistant. Therapies tend to work better earlier in the disease course...

3. Consider newer immunotherapies: CAR-T Cell Therapy and Bispecific Antibodies •

In 2026 we should consider the use of CAR-T Cell Therapy or Bispecific Antibodies for most patients •

However, while these therapies can produce very deep and durable responses, they are associated with important risks

•

Each of type of therapy must be considered in the context of patient characteristics and preferences

•

Choosing to delay one of these therapies now does not mean it cannot be considered later

Negative by next generation flow (NGF) or next generation sequencing (NGS) (minimum sensitivity 1 in 10-5 nucleated cells)

sCR

mCR AND normal Free Light Chain ratio, Bone Marrow negative by flow, 2 measures

Molecular CR

Response

Myeloma Cells & Protein

MRD negative*

CR AND negative PCR

Complete Response: Negative immunofixation (IFE); no more than 5% plasma cells in BM; 2 measures

VGPR

Very Good Partial Response: 90% reduction in myeloma protein

PR MR SD PD

Partial Response: at least 50% reduction in myeloma protein Minimal Response Stable Disease: Not meeting above criteria Progressive Disease: At least 25% increase in identified myeloma protein from lowest level

MRD = Minimal Residual Disease sCR = Stringent Complete Response; BM = Bone Marrow Kumar, S., Paiva, B., Anderson, K. C., Durie, B., Landgren, O., Moreau, P., ... & Dimopoulos, M. (2016). International Myeloma Working Group consensus criteria for response and minimal residual disease assessment in multiple myeloma. The lancet oncology, 17(8), e328-e346. © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

4. Depth of Response Matters

• MRD refers to the persistence of residual tumor cells after treatment • Current techniques can detect MRD with a sensitivity of 10-6

TUMOR LOAD

MRDhigh MRDlow

MRDpos

MRDneg Induction

Consolidation

Maintenance

Preemptive TIME

1. Adapted from Hauwel M, Matthes T. Swiss Med Wkly 2014:144:w13907 2. Biran N, et al. Curr Hematol Malig Rep 2014;9:368–78

MEASURABLE RESIDUAL DISEASE DETECTION

5. Sequencing is Important but not fully We are still learning if there is an “optimal” sequence of understood therapies

•

In general, CAR-T is preferred before bispecific antibodies

•

All therapies can be sequenced in any order, but their effectiveness may be reduced

6. Always discuss quality-of-life and care goals We do not treat myeloma, we treat PEOPLE! How it affects your life and your preferences is critical and must be considered...

Use the Shared Decision-Making Model “The aim of shared decision making 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.”

The Evolution of Myeloma Therapy

NEJM 2026;395:992-100

Proposed definition of a cure for multiple myeloma:

• MRD-negative (0 myeloma cells detected among 1,000,000 plasma cells) • Off all myeloma therapy for five years

LUNCH

IMF NURSE LEADERSHIP BOARD PRESENTATION Daniel Verina, DNP, MSN, RN, ACNP-BC Mount Sinai Hospital - New York, New York IMF Nurse Leadership Board member

Myeloma: Putting the Pieces of the Puzzle Together RRMM Treatment

Myeloma Basics Living Well

NDMM Treatment

Managing Symptoms .

 Myeloma Basics

AGENDA

 Newly Diagnosed Treatment  Relapsed Treatment  Living Well

Myeloma Is a Cancer of the Plasma Cells In Multiple Myeloma, 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). 9 3

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 symptoms • Crowd out normal bone marrow cells • Produce myeloma protein • Can cause kidney dysfunction • Affect bone cells (balance of osteoclasts & osteoblasts)

ag e Bo ne Da m

Changes in bone remodeling

Renal Dysfunction

Calcium Elevation

Bone marrow

Anxiety Stress Depression

9 4

Infections Are Serious for People with Myeloma 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 9 5

Kidney and Bone Health 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.

9 6

Pain Management Pain can significantly compromise quality of life and add to distress. Sources of pain include bone disease, neuropathy and medical procedures. Prevention

Treatment

•

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, biopsy), use sedation if available

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

Discuss with your healthcare provider new bone pain or chronic pain that is not well controlled and decreasing pain medication if pain has improved. 9 7

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.

9 7

 Myeloma Basics

AGENDA

 Newly Diagnosed Treatment  Relapsed Treatment  Living Well

Nature of Myeloma HR-SMM Therapy

M-Protein g/L

Front-Line Therapy

Second-Line Therapy

≥ Third-Line Therapy

ACTIVE MM

ACTIVE MM d

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

9 9

Why Shared Decision Making in Multiple Myeloma? “The aim of shared decision-making 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.”

The nature of multiple myeloma means patients and their care partners may have multiple points to make decisions about treatment People with myeloma are living longer; goals, preferences, and values may change over time 10 0

Patient and Care Partner’s Roles in Shared Decision Making 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 a 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

101

Patient and Care Partner’s Roles in Shared Decision Making 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; reevaluate over time

• 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? 102

IMF Has Resources to Help You Be A Part of Your Treatment Decisions •

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

New Option: Treatment for High-Risk Smoldering Multiple Myeloma (HR-SMM) High-Risk SMM High potential to progress to active MM in 2 years • M-spike ≥ 2 g/dL • Free light chain assay (involved/uninvolved ratio ≥ 20) • Bone marrow ≥ 20% clonal plasma cells A FD oved5 pr 202 p a v No

51% Reduction

in risk of disease progression or death with Darzalex Faspro® treatment of high-risk SMM (compared with active monitoring)

DARZALEX FASPRO® as monotherapy is indicated for the treatment of adult patients with high-risk smoldering multiple myeloma

Use shared decision-making with your provider to determine if treatment is right for you. FDA = US Food and Drug Administration; MM = multiple myeloma; SMM = smoldering multiple myeloma Dimopoulous MA, et al. N Engl J Med. 2024;394(18):1777-1788. doi: 10.1056/NEJMoa2409029. Mateos, MV, et al. Blood Cancer J. 2020;10:102. (2020). https://doi.org/10.1038/s41408-020-00366-3

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Treatment of Newly Diagnosed Multiple Myeloma (NDMM) Induction

Initial treatments aimed at reducing the amount of myeloma cells

Consolidatio n

Intensification of treatment to deepen response. Either additional cycles of induction or autologous stem cell transplant (in eligible patients)

Maintenance

Prolonged lower-intensity treatment designed to sustain remission

National Comprehensive Cancer Network® (NCCN®) NCCN Clinical Practice Guidelines In Oncology (NCCN Guidelines®) for Multiple Myeloma. Version 4.2026. To view the most recent or complete version of the guideline, go online to NCCN.org; Rajkumar et al, 2014. Rajkumar SV. Am J of hematology. 2022;97(8):1086–1107. https://doi.org/10.1002/ajh.26590; Faiman et al, 2016.

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Induction Standard of Care

Induction

Quadruplet therapy is preferred for nearly all patients with newly diagnosed myeloma 1

Anti-CD38 monoclonal antibody (mAb)

Proteosome Inhibitor (PI)

Immunomodulatory drug (IMiD)

Steroid

• Darzalex (daratumumab)

• Velcade (bortezomib) • Kyprolis (carfilzomib)

Revlimid (lenalidomide) • Pomalyst (pomalidomide)

Decadron (dexamethasone) • Prednisone

• Sarclisa (isatuximab)

At infusion clinic: subcutaneous injection or on body device or infusion

Oral medication taken at home

Supportive medication: •

Antiviral prophylaxis (i.e., acyclovir or valacyclovir) to prevent viral infections, particularly shingles.

•

Antibacterial agents (i.e., Bactrim, levofloxacin) to prevent bacterial infections.

•

Aspirin or other anticoagulant therapy to reduce the risk of blood clots from IMiDs.

•

Bone-strengthening agents (i.e., zoledronic acid, denosumab) to strengthen bones and protect against fractures.

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Steroids: An Important Piece of the Treatment Plan 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

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Peripheral Neuropathy 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.

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Blood Clots: Managing DVT and PE Risk Blood clots can cause swelling, pain, discoloration (DVT), 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

10 91 0

Consolidatio n 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

1 1 0

Duration: Approx. 3-4 weeks Location: Transplant Center

POST-TRANSPLANT

PHASE 3

ELGIBILITY

PHASE 2

PHASE 1

Stem Cell Transplant

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.

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GI Symptoms: Prevention & Management 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.

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MRD Testing: The Big Picture Minimal Residual Disease (MRD) Testing • Can provide information on how well treatment is working • Is recommended after each treatment stage (e.g., after induction, consolidation, maintenance) • Should be initiated only at the time of suspected complete response. At Myeloma Diagnosis Myeloma cells (purple) crowd out normal bone marrow cells (peach)

Complete Response No detectable myeloma protein <5% myeloma cells in bone marrow

NCCN Guidelines®. Multiple Myeloma V4.2026. Accessed December 22, 2025.

MRD negative 10-5 = <1 myeloma cell in 100,000 10-6 = <1 myeloma cells in 1,000,000

1 1

 Myeloma Basics

AGENDA

 Newly Diagnosed Treatment  Relapsed Treatment  Living Well

113

Treatment Options at Relapse Myeloma Therapy

Common Combinations or Therapy Names

Belantamab mafodotina

BVd, BPd, BKRd

Bortezomib (SQ admin)

VRd, Vd, VCd

Carfilzomib

KRd, Kd, Dara-Kd, Isa-Kd

Car T-cell

Cilta-Cel®, Ide-Cel® Dara-Rd, Dara-Vd, Dara-Pd, Dara-VMp, Dara-Kd, Dara-Tecvayli®

Daratumumab Elotuzumab

ERd, EPda

Isatuximab

Isa-Pda, Isa-Kd

Ixazomib

IRd

Lenalidomide

VRd, Rd, KRd, Dara-Rd, ERd, IRd

Pomalidomidea

Pda, Dara-Pd, EPda, PCdc

Selinexor

Xd, XVd, XKdc, Dara-Xdc

T cell Engager (Bispecific)b

Elrexfio®, Lynozyfic™, Talvey®, Tecvayli®

Many therapy options are in the myeloma toolkit and more are being studied

New agents or regimens in clinical trials may be an option 2 or more prior therapies. b4 or more prior therapies. cOff-label; not currently FDA-approved. C = cyclophosphamide; d = dexamethasone; Dara = daratumumab; FDA = US Food and Drug Administration; E = elotuzumab; Isa = isatuximab; I = ixazomib; K = carfilzomib; M = melphalan; p = prednisone; P = pomalidomide; R = lenalidomide; SQ = subcutaneous; V = bortezomib; X = selinexor.

1 1 4

NCCN Guidelines®. Multiple Myeloma V4.2026. Accessed December 22, 2025.

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CAR T-Cell Therapy Relapsed MM with 1-2 prior LOT BCMA target: potential for infection • • •

Abecma® (ide-cel) Carvykti® (cilta-cel) (anito-cel – pending FDA approval)

Apheresis to Collect T Cells

T Cell Manufacturing

Bridging therapy, if needed; Lymphodepleting therapy when CAR T cells are ready

T Cell Infusion

Close monitoring and Management of side effects

HOME!

T-Cell Engager (TCE) Therapy Relapsed MM after 4 prior LOT (or clinical trials) TCE are innovative immunotherapies used in the treatment of relapsed multiple myeloma. These therapies work by redirecting the patient's own T-cells to recognize and attack myeloma cells. Bispecific antibodies • About 7 in 10 patients respond • Off-the-shelf treatment; no waiting for engineering cells

Cytotoxic cytokines

T cell

CD3

BCMA target: potential for infection • Tecvayli® (teclistamab) • Elrexfio® (elranatamab) • Lynozyfic™ (linvoseltamab) GPRC5D target: potential for skin and nail side effects, GI issues of taste change, anorexia and weight loss • Talvey® (talquetamab)

MM cell

Target

Bispecific antibody

MM cell death

FcRH5 target: new myeloma target • (cevostamab - pending FDA approval)

BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; GPRC5D = G protein–coupled receptor, class C, group 5, member D; CAR = Chimeric Antigen Receptor; LOT = Lines of Therapy; MM = multiple myeloma. Hucks G, Rheingold SR. Blood Cancer J. 2019;doi:10.1038/s41408-018-0164-6. Shah N, et al. Leukemia. 2020;34(4):985-1005.

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CAR T and Bispecific Antibodies: Known Side Effects CYTOKINE RELEASE SYNDROME (CRS) • Fever • Fatigue & Weakness • Headache • Nausea/Vomiting/Diarrhea • Chills • Low blood pressure • Rapid heart rate • Difficulty breathing

CRS is a common but typically mild & manageable side effect

PREVENTION AND MANAGEMENT of CRS • Disease management to reduce tumor burden • Bispecific Step-up Dosing (SUD) • Tocilizumab • Steroids • Anti-Seizure medications • Close monitoring

ICANS AND NEUROTOXICITY • Headache

• Difficulty concentrating • Lethargy • Agitation • Hallucinations • Tremors • Confusion

Neurotoxicit y is a rare but serious side effect

• Memory loss • Aphasia (difficulty with speech, reading, writing, or understanding language) • 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;25:625638. Kumar, et al. Blood (2024) 144 (Supplement 1): 4758.

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Infection: Medications Can Reduce Risk 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

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 GCSF 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 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.

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Management of Oral Side Effects 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

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.

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Management of Skin and Nail Side Effects 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 Antihistamines, 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 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

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Fatigue, Anxiety and Depression Fatigue

98.8% Anxiety

>35% Depression

≈25%

Fatigue is the most reported symptom. Sources include anemia, pain, reduced activity, insomnia, treatment toxicity, bone marrow suppression. Symptoms can improve with continued physical activity. 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

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.

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 Myeloma Basics

AGENDA

 Newly Diagnosed Treatment  Relapsed Treatment  Living Well

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Healthy Practices: Part of the Big Picture 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 • Socialize and Connect with others

Have a PCP for general check ups, preventative care, health screenings, vaccinations

Have specialists for dental care,

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

eye exams/screening, skin cancer screening

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.

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Care Partners: Essential Pieces of the Puzzle 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 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.

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PANEL Q&A TO FOLLOW

LIVING THE MYELOMA LIFE Shilpa Karnik Patient Advocate Tanay Karnik Care Partner

JOURNEY THROUGH MULTIPLE MYELOMA SHILPA AND TANAY KARNIK

BACKGROUND – ABOUT ME

 59 year old – married to my wonderful husband for 34

year children

 Diagnosed in April 2021 – at the age of 53 

2021 – middle of Covid



Social distancing



Vaccines were not widely available

 Now in remission and MRD negative for 3+ years  Working full time

SYMPTOMS AND DIAGNOSIS Symptoms

Diagnosis Testing

• Constant Headaches over 6 months o Worsening Severe • Vision problem • Double vision

Oct 20 – Mar 21

• Blood Test • Urine Test • Bone Marrow Biopsy • Pet Scan

Brain MRI • Lesion on sphenoid bone

Mar 21

Ophthalmologist visit • 6th nerve palsy

April 21

Biopsy • Plasmacytoma or Multiple Myeloma??

April 21

DIAGNOSIS AND DISEASE STAGING Myeloma Labs on 4/16/2021 MyelomaLabs KAPPA LAMBDA KAP/LAMB RATIO IGA IGG IGM

Result Standard Range 264.24 3.30 - 19.40 12.71 5.71 - 26.30 20.79 0.26 - 1.65 68- 408 mg/dL 79 35- 263 mg/dL 49 3298 768- 1632mg/dL

M protein 2.48g/dL, IgG kappa

Diagnosis 

Plasma cell neoplasm with 15% monoclonal plasma cells in a normocellular (50%) marrow



15% plasma cells on bone marrow biopsy and thus meets criteria for multiple myeloma.

Staging 

ISS-II



High Risk

TREATMENT PLAN

Autologous Stem Cell Transplant (ASCT)

Radiation

• Stem Cell Extraction • Stem Cell Transplant

• 3 cycles

May 2022 – June 2026

May–Oct 2021 May 2021

Nov 2021

Induction Therapy

Maintenance

• RVD 5 cycles + Dara • Zometa

• Revlimid 10 mg (4 weeks cycle) • Dara for 24 weeks • Zometa • Maintenance free since July 2026

SIDE EFFECTS Induction Therapy

ASCT

• Gastrointestinal problems • Tremors • Muscle cramps • Dry skin and eyes • Skin changes • Bone ache • Depression & anxiety • Constant fatigue • Lack of sleep • Weakness • Brain fog • …

• Gastrointestinal problems • Nausea & vomiting • Diarrhea • Mouth sores • Oral Thrush • Loss of hair • Fatigue • Lack of appetite • Muscle cramps • Neuropathy • Brain fog • …

Post Transplant • Loss of vision • Depression • Fatigue • Diarrhea • Muscle cramps • …

Maintenance • Diarrhea • Fatigue • Muscle cramps • …

COPING WITH SIDE EFFECTS

First Step

Nutriton and Diet

Body and Mind

Reach out

Talk to you doctor about your side effects

Dietary changes • Fruits and Vegetables • Healthy meals Neutropenic diet (post transplant)

Walking

Social Services

Yoga

Therapist

Muscle and Bone Strengthening

Nutritionist

Meditation

Reach out to others

Some can be managed with medical help Write a journal Take notes

Stay hydrated

Support Groups

CARE TEAM

Medical Team

• Ophthalmologist • ENT Surgeon • Oncologist – Myeloma Specialist • Radiation Oncologist • Transplant Specialist • Neuro Ophthalmologist • Nurses and Support Staff • Nutritionist

Family and Friends

• Care Partner • Children • Extended Family • Friends

External Support

• Social Services • Therapist • Financial Support Help • Support Groups

RESOURCES

• Latest research info • Clinical trials • Patient and care giver support groups • Wealth of information related to Myeloma

• Cancer screening • Local resources

• • • •

• • • • •

Blood cancer focused Support groups Peer to peer support Nutrition information Financial support

• Chat group

• Clinical trials information • Personalized support

Patient-centric support Global education Community advocacy Clinical consensus guidelines

• New Trials • Personalized support

• Multiple Myeloma Support Group • Beating Multiple Myeloma With A Naturopathic Approach • Chemo Curls!

LESSONS LEARNED  Be your own advocate or someone on your side to advocate for you  Ask questions to your treatment provider and understand all the

consequences and side effects of the treatment

 Ask for alternative treatments if something doesn’t work for you  Do not be afraid to get second or third opinion  Talk to other patients and support groups  Research on your own but don’t overdo  Do not rely on Google searches or AI

CAREGIVER NOTES Being a caregiver is challenging but nothing compared to what the patient has to suffer 

The patient in this case was very responsible and strict about own treatment



Very hard seeing your loved ones' constant suffering



Rewarding to see them achieve simple things, like taking care of themselves, having a full night's sleep, etc.

Simple things make a difference 

Do not Google, Do not plot graphs, Do not be an oncologist (although I am a Dr/PhD)



Continue working (Covid helped)



Take peaceful walks and enjoy the fresh air



Visit places that bring the patient happiness and comfort



Listen to music or watch inspirational movies together



Spend time with family and friends

Today may be tough, tomorrow may be tougher, hang in there. Life is beautiful at the end!!! Thank you, all the diagnosis, vision care, MRI, OHSU, etc. teams and their continued

The Unseen Impact of Myeloma: Taking Care of Your Emotional Health Katie Atkins, LCSW, LCAS, CCS, OSW-C IMF Associate Director, Support Groups

Disclaimer

The International Myeloma Foundation Support Group Team presents this information to support learning and conversations with your healthcare team. This presentation is for informational purposes only and is not intended to provide medical advice or replace guidance from your medical providers.

 Common Emotional Responses  The Spectrum of Emotions  Coping with your Emotions  Grounding Exercises

AGENDA

 When & Where to Seek Help  Wellness Tips & Resources for

Support

 Questions & Discussion

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COMMON EMOTIONAL RESPONSES

Myeloma is often seen through the lens of physical symptoms, treatments, and survival rates.

Beneath the surface of this medical battle lies a profound emotional journey that affects not only the person diagnosed but also their loved ones.

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Initial Feelings Getting a diagnosis of cancer can feel like getting the wind knocked out of you.

All feelings are normal! https://opentextbc.ca/introductiontopsychology/chapter/10-1-the-experience-of-emotion/

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Shock & Disbelief Some patients describe a feeling of numbness or surrealism after a cancer diagnosis; unable to fully grasp the weight of the news. •

Confusion

•

Disconnection

•

Denial

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Anger It is completely normal to experience anger towards: •

Doctors

•

Healthcare team

•

Yourself

•

God

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Fear & Worry Patients describe many fears after a myeloma diagnosis, including: •

Fear of death and dying

•

Fear of pain or treatment

•

Fear of rejection/loneliness

•

Fear about the future

•

Practical worries (finances, housing, career, etc.)

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Grieving Shifts in Identity •

Side effects like fatigue, hair loss, nausea, and cognitive changes can strip away one’s sense of normalcy and identity.

•

Some people feel isolated as they withdraw from social activities, work, or relationships due to physical limitations or emotional distress.

•

The loss of independence and routine can be demoralizing and defeating.

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Relationship Challenges •

Cancer can significantly impact relationships with partners, family, friends, and coworkers.

•

Some people may not know how to respond or offer support, leading to awkwardness, discomfort, or distance.

•

Care partners can also experience emotional exhaustion, guilt, and helplessness as they witness their loved one's suffering.

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Anxiety Symptoms of anxiety include: • ruminating about a specific fear • sleep disturbance • feeling restless or edgy • irritability • being easily fatigued or overstimulated • difficulty concentrating or forgetfulness

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Depression Symptoms of depression include: 

Sleep disturbance



Loss of interest/pleasure in activities that used to feel exciting (anhedonia)

•

Feelings of guilt or worthlessness

•

Psychomotor disturbance

Changes in energy or excessive • Suicidal thoughts fatigue • Depressed mood • Appetite/weight changes •

Prevalence of Depression •

In the US, 23.1% of the general population meet criteria for a diagnosis of a mental health disorder.

•

Over 56% of patients living with blood cancers experience anxiety and depression

Depression is Serious Please take these symptoms seriously AND seek help as you need it! PLEASE call 988 if you ever have thoughts that yo u may want to hurt yourself.

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THE SPECTRUM OF EMOTIONS

Finding Value in the Challenge •

This is never about suggesting the illness itself is “good” or that someone should suffer.

•

Rather, it’s about recognizing that within extremely difficult or unwanted experiences, people sometimes discover forms of meaning, strength, connection, or clarity.

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Emotional and Spiritual Growth Research in psycho-oncology shows that post-traumatic growth is surprisingly common. People sometimes describe: •

A greater appreciation for life’s small moments

•

New or deepened spiritual beliefs

•

A sense of inner strength they didn’t know they had

•

Increased empathy or patience

Suffering forces confrontation with vulnerability and uncertainty, and some individuals emerge with a transformed worldview.

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Healing Versus A Cure •

We may not yet have a cure for myeloma, and the reality is our physical bodies are never perfect, but we can experience emotional or spiritual healing in the midst of this journey.

•

Consider for yourself what it would mean to engage in “healing.”

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Hope & Empowerment Cancer strips away control, but in that loss, people often find a different kind of agency: •

Choosing how to spend meaningful time

•

Choosing how to speak about their experience

•

Choosing how they meet uncertainty emotionally and spiritually

The struggle becomes a teacher of resilience and presence.

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Purpose Through Helping Others A powerful source of meaning comes from turning personal suffering into support for others: •

Advocating

•

Volunteering

•

Leading a support group

•

Sharing one’s story

•

Helping someone newly diagnosed

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COPING WITH YOUR EMOTIONS

Coping with Heavy Emotions • Awareness • Identify • Accept • Recognize • Stay Curious • Let go

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Coping with Heavy Emotions Don’t feel that you have to be “strong.” If you feel tired, lonely, anxious, depressed, angry, etc., acknowledge your feelings and talk about them. If all you want to do is cry, then go ahead. Crying is a natural catharsis.

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Grief & Gratitude “The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them. How much sorrow can I hold? That’s how much gratitude I can give. If I carry only grief, I’ll bend toward cynicism and despair. If I have only gratitude, I’ll become saccharine and won’t develop much compassion for other people’s suffering. Grief keeps the heart fluid and soft, which helps make compassion possible.” -Francis Ward Weller

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GROUNDING TECHNIQUES

Emotional Grounding Techniques 5-4-3-2-1 Grounding Exercise The “Butterfly Hug” or other bilateral stimulation exercises Mindful Walking 4 Square breathing Categories (i.e. Colors, college football teams, etc.) Aromatherapy Hold a piece of ice Eat a small bite of food with intention and mindfulness © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

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WHEN & WHERE TO SEEK HELP

Practical Help Think about what you need. Lots of people will want to help but don’t know how. •

Practical needs

•

Financial help

•

Emotional support

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When to Seek Professional Help Your mental health is as important as your physical health! Tell your healthcare team or another medical professional if you need support. Ask if your hematology/oncology clinic employs a clinical social worker or counselor. Emotional support and therapy services are available at many clinics.

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WELLNESS TIPS & RESOURCES FOR SUPPORT

Support Groups Provide a Sense of Belonging • • • • • • • • • •

Included Welcomed Connected Accepted Involved Supported Heard Valued Seen Hopeful

Wellness Tips  Talk to friends and family, and others you trust  Ask for help and be specific about what you need  Join a support group  Get education and information only from reliable/reputable sources  Take time for yourself  Spend time with supportive friends  Celebrate every victory! © 2026, International Myeloma Foundation. All rights reserved. IMF Confidential

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Resources Talk with your doctor to determine what plan of action works best for you. Medications could potentially be part of a treatment plan that you and your doctor work on together. If you think therapy/counseling could be beneficial, ask for a referral or check out websites/platforms such as: •

Headway

•

Better Help

•

Talkspace

•

CaringBridge

•

Psychology Today

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Follow up Questions or Discussion? Please feel free to reach out to us! IMF Support Group Team: SGTeam@myeloma.org

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