Issuu

2026 IMF VIRTUAL MYELOMA COMMUNITY WORKSHOP

APRIL 20, 2026

“I HAVE WHAT?”

STARTING THE MYELOMA JOURNEY

Agenda Times listed are in Pacific Standard Time

3:00pm – 3:10pm PST Welcome and Announcements (10 minutes)

Robin Tuohy, 26-year Myeloma Care Partner

Vice President, Patient Support, International Myeloma Foundation

3:10pm – 3:40pm PST Myeloma 101: What You Need to Know (30 minutes)

Joseph Mikhael, MD, Med, FRCPC, FACP

IMF Medical Advisor (TGen, City of Hope—Phoenix, AZ)

3:40pm – 4:00pm PST Management For Newly Diagnosed, NOT Going to Transplant (20 minutes)

Noffar Bar, MD

Yale School of Medicine, New Haven, CT

4:00pm – 4:15pm PST Q&A

4:15pm – 4:25pm PST BREAK (10 minutes)

4:25pm – 5:00pm PST Myeloma Management for People Newly Diagnosed: Transplant Eligibility, Logistics & Planning (25 minutes)

Ciara Freeman, MD, PhD

Moffit Cancer Center, Tampa, FL

5:00pm – 5:30pm PST Myeloma: Putting the Pieces of the Puzzle Together (30 minutes)

Amy Pierre, MSN, RN, ANP-BC

Memorial Sloan Kettering Cancer Center & Flatiron Health

IMF Nurse Leadership Board Member

5:30pm – 5:55pm PST Q&A

5:55pm – 6:00pm PSTClosing Remarks

Thank you to our Sponsors!

Myeloma 101

Joseph Mikhael, MD MEd, FRCPC, FACP

IMF Medical Advisor

How common is Myeloma in the US?

Percent of New Cases by Age

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

In most cases, the honest truth

WE DON’T KNOW

What is the Connection Between Bone Marrow & Myeloma ?

Hematopoietic stem cell

Red Blood Cells Carry Oxygen White Blood cell Fight Infection Platelets Prevent Bleeding

Photo Credit

Understanding (Mono)clonal Plasma Cells

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

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

Is Myeloma the Only Protein Disorder?

• AL-Amyloid

• POEMS

• Light or Heavy Chain Deposition Disease

• MGCS = Clinical

• MGRS = Renal

Condition MGUS1-4 (Monoclonal Gammopathy of Undetermined Significance)

1-5,8 (Smoldering Multiple Myeloma)

• MGNS = Neuro * In clinical trial

Multiple Myeloma and Myeloma Defining Events

Test Name

Testing For Myeloma: Blood & Urine

What it means

CBC + differential

Complete metabolic panel

Beta-2 Microglobulin (B2M)

Lactate Dehydrogenase (LDH)

Serum Immunofixation and Protein electrophoresis (SPEP+IFE)

Immunoglobulins (G, A, M, D, E)

Free light chain assay with kappa/lambda ratio

Urine immunofixation & protein electrophoresis (UPEP+IFE)

Hemoglobin, WBC, Platelets

Creatinine, Calcium, Albumin, Liver function

Part of staging and risk stratification

Measures the level of normal and clonal protein

Identifies the type of clonal protein

Measures the level of normal and clonal protein

Identifies the type of clonal protein

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

Imaging:

Testing For Myeloma: 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)

Healthy bone versus myeloma bone disease

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

Testing For Myeloma: Bone Marrow

Bone marrow biopsy & aspirate

• Bone marrow plasma cells (%)

• Congo Red staining if concern for

Bone marrow genetics

• Cytogenetics

• Fluorescence in situ hybridization (FISH)

• Next generation sequencing (NGS)

(p53del)

*15-20% of people with NDMM

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

What is the Myeloma Treatment Landscape?

Initial Therapy (a.k.a. Frontline, Induction) Quad Therapy (ex. CD38+ MoAb + VRd)

Drug Class Overview

(thalidomide)

(lenalidomide)

(pomalidomide)

(daratumumab) Sarclisa (isatuximab)

(elotuzumab)

Drug Class Overview

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) Cilta-cel

Tecvayli (teclistimab)

Talvey (Talquetamab)

Elrexfio (Elranatamab)

Lynozyfic (Linvoseltamab

Tec Talq Elra Linvo

Cevostamab, Iberdomide, Mezigdomide, Anito-cel, Venetoclax

AZD0120, Etentamig, KLN-1010, Trispecifics …………………………… MORE 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

Measuring Disease Response: IMWG Response Criteria

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

Targets on the Myeloma Cell Surface and Therapeutic Antibodies

Bi-Specific Antibodies

Talvey (Talquetamab) CAR-T

Antibody Drug

Empliciti (Elotuzumab)

Bi-Specific Antibodies

CAR-T

Monoclonal Antibodies

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

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

How it works:

An antibody directed at a target (BCMA) combined with a cytotoxic agent (chemotherapy) Blenrep(belantamabmafodotin)combinations approvedbyUKMHRAinrelapsed/refractorymultiple myeloma.April2025

ADC = Antibody-Drug Conjugate

BCMA = B-Cell Maturation Antigen

ADCP/ADCC = Antibody-Dependent Cellular Cytotoxicity & Phagocytosis

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

“Off the Shelf” Advantage

• No manufacturing process, unlike CAR T-cell therapy (but like ADC/belantamab therapy)

• Thus, no delay between decision to treat and administration of drug 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

Image Source: Shah N, et al. Leukemia. 2020;34:985–1005. Creative Commons License:

The Process of CAR T Cell Therapy

CAR T therapy recommended. Insurance approved and ready to move forward.

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

 Elimination of disease, down to Minimal Residual Disease Negative (MRD-)

 Prolonged deep response Off Therapy

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

 A recent DRAFT definition is being considered:

The Evolution of Myeloma Therapy

Rev/Dex

CyBorD

VTD

VRD KRD

D-VMP

DRD

Tandem ASCT (?)

Nothing

Thalidomide?

Bortezomib

Ixazomib

Lenalidomide

Combinations

D-VRD

Isa-VRD

D-KRD

Isa-VRD “More” induction?

Bortezomib

Lenalidomide

Carfilzomib

Pomalidomide

Selinexor

Panobinostat

Daratumumab

Ixazomib

Elotuzumab

Isatuximab

Belantamab mafodotin*

Melphalan flufenamide*

Idecabtagene autoleucel

Ciltacabtagene autoleucel

Teclistamab, Talquetamab

Elranatamab, Linvoseltamab

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.

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

Management for Newly Diagnosed, NOT Going to Transplant

Noffar Bar, MD

Yale School of Medicine, New Haven, CT

Management for Newly Diagnosed, NOT Going to Transplant

Noffar Bar, MD

Assistant Professor of Medicine

Initial treatment for myeloma patients not going for transplant

Induction

Burden of disease

Goal of therapy is to achieve deep and durable responses

Minimal residual disease

(MRD) negativity

Treatment goals

Treatments

Initial

treatment for myeloma now includes a monoclonal antibody

Myeloma cell destruction antibody

Leading to longer periods without the disease returning

Treatments used for initial therapy (induction)

Steroids

IMID’s

Proteasome inhibitors

Monoclonal antibodies

Daratumumab (Dara)

(Isa)

Bortezomib (V)

Choosing the Right Treatment Path for You

Every patient is different:

your care team will work with you to find the approach that fits your life and health

More physically active

Less active/older age > 80

✓ Generally active day-to-day

Able to manage most daily activities on your own

✓ Good overall energy levels

Feel relatively well most of the time

✓ Ready for a full 4-drug regimen

Your body can handle a stronger combination

Treatment: DaraVRd or IsaVRd (4 drugs)

★ Treatment shaped around you

Your age, energy levels & other conditions all matter

★ Gentler on your body

Carefully chosen doses to keep you feeling your best

★ Just as effective for you

Designed to get a great result with fewer side effects

Treatment: DaraRd or Dara-R (2–3 drugs)

How well do these treatments work?

Out of 100 patients treated with modern myeloma therapy... More than 92 respond

Whether using 2-drug, 3-drug or 4-drug combination with an anti-CD38 antibody

Deep responses (MRD negativity) increase when more drugs are given together

Facon et al. Leukemia

Manier et al. Lancet Oncol

What to expect while starting treatment

Time Commitment

Induction:

Weekly treatments in clinic for the first few months

Maintenance:

Monthly clinic visits

Assessing successful treatment

Side Effects

Labs

Whole body imaging with PET CT or MRI

Learning about possible side effects

Bone marrow biopsy

Communication with your care team regarding new symptoms

Common culprit

Common side effects

Steroid related side effects

Dexamethasone

Dexamethasone is given as part of anti-myeloma therapy and as a pre-medication prior to daratumumab

Fluid retention- leg swelling High blood pressure High blood sugars

Cataracts

Some toxicities occur in the short term and others over time

Dose reduction of dex does not appear to worsen outcomes in induction using double and triplets (prior to addition of Daratumumab in upfront therapy).

Dex is not needed as pre-med after first few cycle of daratumumab

Lower dose for toxicity Minimizing unneeded steroids Goals: +

Lonial et al. Clinial lymphoma, Myeloma and Leukemia 2023; Aaron Rosenberg, Leukemia & Lymphoma 2023; Banerjee et al, Blood 2024

Rash

Common culprit: lenalidomide

Steps in managing side effect

If mild

Anti-histamines

Topical corticosteroids (triamcinolone)

If worse

Hold Lenalidomide

In addition to above, consider oral prednisone

Restart len at lower dose

Higher risk

• Twice weekly dosing

• IV formulation

Peripheral Neuropathy

Common culprit: bortezomib

Steps in managing side effect

Monitoring for symptoms and adjusting dose for mild symptoms

Holding dose when neuropathy involves pain or more than mild

Gabapentin, pregabalin or anti-depressant to improve pain

Diarrhea

Common culprit: lenalidomide

• Baseline factors that might increase the risk of diarrhea: history of IBS, lactose intolerance

• Lenalidomide has small amount of lactose

• Lenalidomide can lead to bile acid malabsorption

Managing side effect

Dose reduction depending on severity and response to initial steps

Fluid intake

Imodium trial

Bile acid binders like colesevelam (welchol)

How does the

addition of Daratumumab to induction affect side effects?

Lower neutrophil counts and platelets

Slightly more infections like Pneumonia

IVIG consideration Ways to mitigate risk of infections

Use of routine vaccinations

Initial therapy for myeloma does not stop after induction

3 or 4 drug induction

Burden of disease

Maintenance with 2 drugs: lenalidomide and daratumumab

• Less frequent clinic visits

• lower doses of lenalidomide

Time from diagnosis (months)

After Induction, maintenance therapy helps keep myeloma under control for as long as possible.

How long does the myeloma stay in control?

The time to relapse depends on how aggressive the disease is and how well it responds to treatment

More than half of patients still have their myeloma under control 5 years after starting treatment with 3- or 4-drug combinations.

with Dara-Rd and 68% with Dara-VRd

Myeloma under control

Clinical trials in newly diagnosed myeloma

Clinical trials in newly diagnosed myeloma often test treatment or treatment combinations that have already been tested and shown to be effective in relapsed myeloma

For example: T-cell redirection therapies

Work very well in relapsed myeloma

T cells

Bispecific T cell engagers (TCE)

T-cell redirection therapies myeloma

CART cell

MM-marker

cells

Understanding clinical trial phases

Not all studies are open at all centers

Talk with your doctor about available study options

Take home messages

• Your treatment is getting better! New medicines and procedures are helping patients live longer and better lives.

• Personalized Treatment: Treatments are tailored based on patient’s health and other medical problems.

• Stay Connected: Keeping your care team informed helps us treat you safely, manage side effects early, and get the best possible results.

Q&A

10-Minute Break

Myeloma Management for People

Newly Diagnosed: Transplant Eligibility, Logistics & Planning

Ciara Freeman, MD, MSc, PhD

Moffit Cancer Center, Tampa, FL

Ciara L Freeman, MD MSc PhD

Associate Member, Department of Blood and Marrow Transplant and Cellular Therapy

A little about me….

Myeloma Management for Newly Diagnosed Patients

Transplant

eligibility: who qualifies

Timing and decisionmaking Logistics and planning

Overview

Treatment selection in multiple myeloma remains heterogeneous despite rapid therapeutic advances

The introduction of autologous transplantation transformed outcomes, but despite being in the guidance and after decades of experience still remains controversial

CAR-T and bispecific T-cell engagers are increasingly used earlier, often interchangeably and may change how we feel about transplant in the future Emerging data suggest timing matters, particularly with respect to T-cell fitness, durability, and survival

This presentation evaluates the patient journey for potentially eligible patients

What Happens After Diagnosis?

Confirm diagnosis and stage disease

Assess overall health

Start initial therapy

Build care team

What Is a Stem Cell Transplant?

Uses your own stem cells

High-dose chemo followed by reinfusion

Deepens response

Not surgery

What is the process?

Fit for transplant?

Myeloma XI – 64-70y.o. matched cohort

PFS: HR 0.41

OS: HR 0.51

Current frailty assessment tools may not be as robust in assessing older adults for HSCT

ASH2022 #2118

Older patients derive equal benefit, HCT-CI non- discriminatory

ASH2022 #4512 N=101 HSCT “candidates”

R-MCI limited utility

Pawlyn, C., et al., Haematologica, 2020

S.J. Grant, C.L. Freeman, and A.E. Rosko, Hematology. 2021.

Who May Not Need Transplant Right Away?

or medical issues

Timing of Transplant

After 3–6 months of therapy

Stem cells collected early Immediate or delayed transplant

What Does the Process Look Like?

Stem cell collection Hospital or outpatient stay

Recovery phase Weeks to months recovery

Logistics to Plan For

Caregiver Role

Medication and appointments Monitor for complications

Emotional support Key decision partner

Questions to Ask Your Doctor

• Am I eligible?

• Timing: now or later?

• Where should I go?

• What is recovery like for me?

Big Picture

Personalize d care

Multiple treatment options

Improving outcomes Transplant is one tool

Acknowledgements

Our Patients, their families, and care-givers

Locke Lab

BMT-CI team @ Moffitt

Myeloma Clinical Team:

Melissa Alsina

Rachid Baz

Kenneth Shain

Doris Hansen

Brandon Blue

Ariel Grajales-Cruz

Taiga Nishihori

Omar Castaneda Puglianini

Hien Liu

Lindsey Gardener

Myeloma Research Team:

John Koomen

Xiaohong Zhao

Mark Meads

Gabriel De Avila

Danny De Avila

Ariosto Silva

Conor Lynch

John Cleveland

Frederick L Locke

Meghan Menges

Emily Merritt

Reginald Atkins

Sophia Song

Constanza Savid-Frontera

Luis A Cuadrado Delgado

Jerald Noble

Benjamin Gyau

Data team

Robert Norberg

Omkar Bhabad

Myles Kim

Alina Hoehn

Rachel Howard

Phillip Reisman

Myeloma: Putting the Pieces of the Puzzle Together

Amy Pierre, MSN, RN, ANP-BC

Memorial Sloan Kettering Cancer Center & Flatiron Health

IMF Nurse Leadership Board Member

Myeloma: Putting the Pieces of the Puzzle Together

Myeloma Basics

Myeloma Is a Cancer of the Plasma Cells

Plasma Cells

come from white blood cells produced in the bone marrow and many different antibodies to help fight infection (polyclonal).

In Multiple Myeloma, one plasma cell mutates, making many identical plasma cells (monoclonal).

Bone marrow

Bone marrow

Myeloma Causes Cell Dysfunction & Symptoms

Anxiety

Stress

Depression

Decreased red blood cells

Decreased white blood cells

Anemia & Fatigue

Immune Dysfunction & Infection

Myeloma protein in blood and urine

Changes in bone remodeling

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)

Renal Dysfunction

Bone Damage

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).

Report fever of more than 100.4°F, shaking chills even without fever, dizziness, shortness of breath, low blood pressure to HCP as directed.

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)

As recommended by your healthcare team:

Immunizations:

Flu, COVID, RSV & and pneumococcal vaccinations; avoid live vaccines

Preventative and/or supportive medications

Kidney and Bone Health

Protect Kidney Function

Myeloma Treatment

Stay hydrated--drink water

Avoid certain medications

• 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

Protect Bone Health

• Myeloma Treatment

• Nutrition

• 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)

Report any new or worsening bone pain to your healthcare provider

Pain Management

Pain can significantly compromise quality of life and add to distress.

Sources of pain include bone disease, neuropathy and medical procedures.

Prevention

• 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

Treatment

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

Fatigue, Anxiety and Depression

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.”

Bee an Empowered Patient

Ask questions

• What do the different labs mean?

• Who will be monitoring my labs?

• How can I access my test results (eg, patient portal)?

• How will we know if my treatment is working

• What will we do if my treatment doesn’t work or quits working?

• When is my next appointment?

• The cost of my copay is challenging. Is there anything we can do?

• What are the most consequential things I can do to support my health?

Speak

up if something seems different or unusual

• Normally 4 vials of blood but only drawing 3?

• Normally specialty pharmacy confirms delivery but haven’t heard from them this month?

• I’m feeling more pain in my shoulder. I’m feeling more fatigued.

Communicate with your healthcare team

• Understand the roles of each team member

Who to contact for your needs (eg, side effects, insurance issues, other)

Develop a support network

Learn from others: IMF has many support groups or you can start one (IMF’s can help)

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

Patient and Care Partner’s Roles in Shared Decision Making

Ask questions (write them down in advance of visit)

• 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?

Express your desire to participate in the treatment decisions

• 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

Ask for time (if needed/ appropriate)

• 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

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?

Clinical Trials Are an Option

Clinical trials are research studies that test a medical, surgical, or behavioral intervention in people

Possible Benefits of MM Clinical Trial Participation:

The trial may help researchers learn more about MM and help people in the future

You might have access to a treatment that is under study that may not be available to people outside the trial

The research team (including top doctors) will watch you closely, adding an extra layer of care to your health

• Clinical trial nurses are often very experienced with a wealth of information

If the treatment being studied is more effective than the standard treatment, you may be among the first to benefit

Clinical Trial Myths

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: 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

• For MM, 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 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

Every clinical trial is different, which means risks can also differ

• Clinical trial team will discuss risks with you and your care partner(s)

• The study treatment may not be better than, or even as good as, the standard treatment

• Study treatments may have serious side effects that are worse than those of the standard treatment

• You may be required to make more visits to the doctor and have more tests than if you were receiving standard treatment

• You may have extra expenses related to these extra visits, such as travel, housing, and childcare costs

Possible Risks in Treatment Clinical Trials

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

51% Reduction in risk of disease progression or death with Darzalex Faspro® treatment of high-risk SMM (compared with active monitoring)

FDA approved Nov2025

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

Treatment of Newly Diagnosed Multiple Myeloma (NDMM)

Initial treatments aimed at reducing the amount of myeloma cells

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

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.

Induction Standard of Care

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

1 2 3 4

Anti-CD38 monoclonal antibody (mAb)

• Darzalex (daratumumab)

• Sarclisa (isatuximab)

Proteosome Inhibitor (PI)

• Velcade (bortezomib)

• Kyprolis (carfilzomib)

Immunomodulatory drug (IMiD)

Revlimid (lenalidomide)

• Pomalyst (pomalidomide)

• Prednisone

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.

Steroids: An Important Piece of Treatment

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, depression

• Difficulty sleeping (insomnia), fatigue

• Blurred vision, cataracts

• Increased risk of infections, heart disease

• Muscle weakness, cramping

• Increased blood pressure, water retention

• Flushing/sweating

• Stomach bloating, hiccups, heartburn, ulcers, or gas

• Weight gain, hair thinning/loss, skin rashes

• Increased blood sugar levels, diabetes

Managing Steroid Side Effects

• Consistent schedule (AM vs. PM)

• Take with food

• Stomach discomfort: Overthe-counter or prescription medications

• Medications to prevent shingles, thrush, or other infections

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

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:

Numbness

Tingling

Prickling sensations

Sensitivity to touch

Burning and/or cold

sensation

Muscle weakness

Prevention / management:

Bortezomib once-weekly and/or

subcutaneous administration

Massage area with cocoa butter regularly

Neuroprotective Supplements

• i.e., B-complex vitamins (B1, B6, B12)

Safe environment: rugs, furnishings, shoes

If neuropathy worsens, your provider may:

Adjust your treatment plan

Prescribe oral or topical pain medication

Suggest physical therapy

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

Blood clots are serious and can be life threatening.

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)

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.

Autologous Stem Cell Transplant (ASCT)

Upfront ASCT remains the standard of care for eligible patients because it

• Increases progression-free survival (PFS)

• Increases overall response rates (ORR) and minimal residual disease (MRD) negative rates

Deciding if/when to undergo a transplant is an individual decision for you and your care partner(s)

• Delaying transplant may be an option (stem cells still collected)

Understanding the ASCT process aids in decision-making

Clinical Experience

DECISION

Patient

Preference

Adapted from Philippe Moreau, ASH 2015

Stem Cell Transplant

ELGIBILITY

Location: Transplant Center P H A S E 1

Measuring treatment response Testing for Eligibility

Insurance authorization Collecting stem cells

Duration: Approximately 2 weeks

P H A S E 2

TRANSPLANT

HD-Melphalan Stem cell infusion Supportive Care

• GI Management

• Transfusions

• Antibiotics

Hair Loss Engraftment

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

Location: HOME P H A S E 3

Restrengthening Appetite recovery

“Day 100” assessment Begin maintenance therapy

Duration: Approximately 1012 weeks

Determining Transplant Eligibility

Phase 1: Eligibility

• Disease Restaging

• Multi-system organ evaluation

• Performance Status

• Age is NOT the deciding factor

Psychosocial Considerations

• Patient preference

• Caregiver support

• Time away from work

• Clinical trial participation

Physical Considerations

• Minimum of 3 million per ASCT

• Additional cells for storage

• G-CSF +/- Chemo or +/- plerixafor or motixafortide

Stem Cells Collection

Miceli T, et al. Clin J Oncol Nurs. 2013;17(6)suppl:13-24. Miceli and Steinbach, 2021. Stem Cell Transplant, Ch4, ONS.

Stem Cell Collection – “Apheresis”

Phase 1: Collecting Stem Cells

Stem cells are naturally created to have bone marrow growth but need to be stimulated and “mobilized” to produce at the level needed for collection.

Chemo-mobilization or growth-factor alone, +/- plerixafor or motixafortide

Goal of collection is based on number of planned transplants (current and future)

Apheresis is the medical process for separation of blood components, allowing for collection of CD34+ cells (stem cells)

Stored cells may be used following CAR-T to help with bone marrow recovery

Miceli T, et al. Clin J Oncol Nurs. 2013;17(6)suppl:13-24. Miceli and Steinbach, 2021. Stem Cell Transplant, Ch4, ONS.

Transplant

Phase 2: Transplant

Measured as a timeline, often starting on Day -2 as a count down to transplant day, “Day 0”. Each day following is “Day +xx”.

Day -2: High Dose Melphalan, IV

Day 0: Stem cell infusion, a.k.a.

Transplant

Side effects: hair loss, GI toxicity, bone marrow failure

Typical timeline:

Day +7: experiencing side effects

Day +14: early signs of engraftment

Day +21: prepare for transition to Phase 3, HOME.

Management: IV hydration & electrolytes, transfusions, time

Engraftment: Bone marrow and blood count recovery

Miceli T, et al. Clin J Oncol Nurs. 2013;17(6)suppl:13-24. Miceli and Steinbach, 2021. Stem Cell Transplant, Ch4, ONS.

GI Symptoms: Prevention & Management

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®

Fluid intake can help with both diarrhea and constipation and helps kidney function Discuss GI issues with healthcare providers to identify causes and adjust medications and supplements

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

Post Transplant

Phase 3: Post Transplant

Marked by engraftment and a transition to home care and recovery

Time is needed for full recovery. This will vary from one person to another.

Care partner support will still be needed in the early days after returning home.

Day +21: APPROXIMATE time when people will transition to home.

Restrengthening, regaining energy

Appetite recovery

Day +60 to Day +100: anticipate start of maintenance therapy

Near 6 months: Begin post-transplant immunizations

Miceli T, et al. Clin J Oncol Nurs. 2013;17(6)suppl:13-24. Miceli and Steinbach, 2021. Stem Cell Transplant, Ch4, ONS. National Comprehensive Cancer Network® (NCCN®) NCCN Clinical Practice Guidelines In Oncology (NCCN Guidelines®) for Multiple Myeloma.

Care Partner Support during ASCT

Care partner support is essential for the entire transplant process.

Phase 1: Sedated procedures; Education sessions

Phase 2: Some transplant centers allow for outpatient transplant management if a care partner is present to assist with daily activities, medication management and alert the medical team of changes

Phase 3: Continued support and assistance is often needed in the early days after returning home. Less assistance will be needed as time and healing go on.

Care partner(s) can be one person or a rotation of many people.

Maintenance Is Recommended for Myeloma Patients After Initial Treatment

Maintenance therapy is recommended for patients with myeloma

• After transplant (ASCT)

• In transplant-ineligible or those with deferred transplant after induction/consolidation

Maintenance is prolonged lower-intensity treatment designed to sustain remission

Maintenance therapy

Benefits of maintenance therapy

• Increased progression-free survival (PFS)

• Deepened responses--increases overall response rates (ORR) and minimal residual disease (MRD) negative rates

• Improved overall survival (OS) in some studies

• Standard of care: Revlimid (lenalidomide) 10 or 15 mg pill every day – REMS program

Specialty pharmacy

Other options

Anti-CD38 antibody-based

Proteasome-inhibitor based

New options in clinical trial like CELMoDs

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

MRD negative

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

Nature of Myeloma

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.

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, eye exams/screening, skin cancer screening

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.

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

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)

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

IMF Tip Cards

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.

“THANK YOU!”

Q&A

Workshop Video Replay & Slides

As follow up to today's workshop, we will have the speaker slides and a video replay available. These will be provided to you shortly after the workshop concludes and posted to our website under “IMF Videos”

We Want to Hear From You

Feedback Survey

At the close of the meeting a feedback survey will pop up.

This will also be emailed to you shortly after the workshop.

Please take a moment to complete this survey.

Thank you to our sponsors!

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.