IMF Chicago PFS Slides - FRIDAY October 3, 2025

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2025 IMF PATIENT AND FAMILY SEMINAR

CHICAGO, IL

OCTOBER 3 & 4, 2025

Thank you to our sponsors!

IMF PATIENT AND FAMILY SEMINAR

CHICAGO

FRIDAY AGENDA

Housekeeping Items

Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.

Program Evaluations: Please be sure to complete your program evaluation and return your evaluations at the end of the program or on your way out.

Restrooms: Turn left exiting the meeting room and bathrooms are on your left before the lobby Badge Holders: Please return your badge holders and we can recycle them

Wifi: Network – Marriott Bonvoy Conference, Password - patient104

Parking: Onsite parking in the South Lot is complimentary

We greatly appreciate your time and feedback!

Scientific Advisory Board

S. Vincent Rajkumar, MD

IMF Board Chair

Thomas Martin, MD

UCSF, Helen Diller Family

Comprehensive Cancer Center

Wee Joo Chng, MD

National University of Singapore

María-Victoria Mateos, MD, PhD

University of Salamanca

Vania Hungria, MD, PhD Santa Casa de São Paulo

Joseph Mikhael, MD, MEd, FRCPC, FACP IMF Chief Medical Officer

Sigurður Yngvi Kristinsson, MD, PhD

University of Iceland

Philippe Moreau, MD

University Hospital of Nantes

Shaji Kumar, MD Mayo Clinic

NIkhil Munshi, MD Dana-Farber Cancer Institute

Sagar Lonial, MD, FACP

Winship Cancer Institute, Emory University

Jesús San Miguel, MD, PhD

University of Navarra

Saad Zafar Usmani, MD, MBA, FACP, FASCO Memorial Sloan Kettering Cancer Center

Support Group

Shared Experiences Help to Better Understand the Myeloma Journey

• Support Groups empower patients & care partners with information, insight & hope

• The IMF provides educational support to a network of over 150 myeloma specific groups

150+ US Support Groups

Over 200 Support Group Visits/year

 Univ. of IL at Chicago

 Meets virtually on the 2nd Tuesday of each month at 6:30 PM Central Time

 Aurora

 Meets hybrid on the 1st Wednesday of each month at 6:00 PM Central Time

 University of Chicago

 Meets virtually on the 2nd Wednesday of each month at 10:30 AM Central Time

 Mokena

 Meets virtually on the last Thursday of each month at 4:00 PM Central Time

 Northbrook

 Meets virtually on the 1st Wednesday of each month at 7:00 PM Central Time

Fort Wayne

 Meets hybrid on the 1st Tuesday of each month at 6:00 PM Central Time

 Bloomington

 Meets hybrid on the 2nd Tuesday of each month at 5:30 PM

Central Time

 Indianapolis

 Meets in-person on the 1st Monday of each month at 6:00 PM Central Time

Special Interest Groups

Special interest groups are designed as a supplemental support for specific populations of patients, in addition to their local Support Groups

 MM Families

 Founded in 2021

 For patients & care partners with young children

 Las Voces de Mieloma

 Founded in 2022

 For Spanish speaking patients & care partners

 Living Solo & Strong

 Founded in 2022

 For patients without a care partner

Click here for more info

 Smolder Bolder

 Founded in 2023

 For smoldering myeloma patients & care partners

 Veterans SIG

 Founded in 2025

 For those who served our country

 High Risk Multiple Myeloma

 Founded in 2023

 For high-risk myeloma patients & care partners

 Care Partners Only

 Founded in 2024

 For myeloma care partners only

WRITTEN EDUCATION

Live Patient Education

4 PATIENT & FAMILY SEMINARS including world-renowned experts

10 MYELOMA COMMUNITY WORKSHOPS including local myeloma experts

Locations

2025 Live Patient Education

1. Ensure Access to Care: We advocate to ensure all myeloma patients have equitable, comprehensive, patient-centered care without insurance barriers that limit options or delay treatment initiation.

2. Eliminate Financial Barriers: We advocate for policies that allow myeloma patients access to treatments and supportive care interventions without facing financial hardships.

3. Advance Myeloma Research: We advocate for annual appropriations funding for myeloma research and the advancement of clinical trial eligibility and research protocols that ensure representation from diverse populations.

The IMF Grassroots Advocacy Program is multi-faceted and growing

• Advocacy Training & Leadership Development

• Policy and Legislative Education

• Grassroots Campaign Planning

• Health Policy Forums & Roundtables

• Advocacy Resource Development

• Storytelling and Personal Narratives

INTERNATIONAL MYELOMA FOUNDATION

CELEBRATING 35 YEARS!

IMF 35TH ANNIVERSARY TIMELINE :: 1990-2002

IMF 35TH ANNIVERSARY TIMELINE :: 2004-2016

IMF 35TH ANNIVERSARY TIMELINE :: 2018-2025

WELCOME IMF PRESIDENT & CEO

HEATHER COOPER ORTNER!

“I am humbled to serve alongside so many who are making a different every day for patients and families affected by myeloma, and I look forward to building on the IMF’s legacy of impact”

Hot Topics in Myeloma

Patient Empowerment: Shared Decision Making

University of Texas MD Anderson Cancer Center, Houston, TX

Patient Empowerment: Participating in Shared Decision Making

Tiffany Richards, PhD, ANP-BC, AOCNP® Manager, Myeloma Advanced Practice Providers Department of Lymphoma/Myeloma​ MD Anderson Cancer Center

IMF Nurse Leadership Board Member

OUR VISION:

A world where every myeloma patient can live life to the fullest, unburdened by the disease.

OUR MISSION:

Improving the quality of life of myeloma patients while working toward prevention and a cure.

Goals

• Review Shared Decision Making (SDM) Concepts

• Identify Influencing Factors To Treatment Decision Making

• Discuss Strategies To Enhance Patient Empowerment & Promote Shared Decision Making

Patient-Centric Care

“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.”

Image Credit: https://www.ahrq.gov/health-literacy/professional-training/shared-decision/index.html

Agency

for Healthcare Research and Quality (AHRQ)

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html#6i1

Steps in the Shared Decision-Making Process

 Identify that a decision is needed: The HCP informs the patient that a decision is to be made and that the patient's opinion is important (Choice talk).

 Understand the options:

The HCP explains the evidence-based options and their pros and cons. The patient expresses their preferences, and the HCP supports the patient in decision-making (Option talk).

 Come to a decision:

The HCP and patient discuss the patient's wish to take part in the decision making and incorporate the patient's values and preferences into the decision (Decision talk).

 Follow-up:

Review and evaluate the decision, adjust as needed

Benefits of Shared-Decision Making

Patients, regardless of age, want to be a part of treatment decisionmaking

Reduces uncertainty and alleviates concerns

Decisions reflect personal and family values and preferences

Requires staying informed

Promotes patient and care partner engagement and sense of empowerment

Positive impact on QOL and continuation on therapy

“The 'efficacy' of treatment means different things to different patients, and treatment decision-making in the context of personalized medicine must be guided by an individual's composite definition of what constitutes the best treatment choice.” Terpos, et al.

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html#6i1. Choon-Quinones, M. et al. 2022; Terpos, et al. 2021

Factors That Influence Shared-Decision Making

Disease-Derived

Biology: Risk stratification, Urgent intervention needed vs time to consider options

Treatment: Availability/access, effectiveness, toxicity, current research

Patient-Derived

Understanding complex treatment options

Physical and emotional wellness

Comfort in speaking up “Doctor knows best”

Financial, Cultural and Religious factors

Care partner & social network, transportation

Provider-Derived

Time limitations

Support for patient involvement

Provider bias and preference

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html#6i1. Choon-Quinones, M. et al. 2022; Terpos, et al. 2021 https://www.valueinhealthjournal.com/action/showFullTableHTML?isHtml=true&tableId=tbl4&pii=S1098-3015%2822%2900198-X

STRATEGIES FOR PATIENT EMPOWERMENT & SHARED DECISION MAKING

Strategies: Stay Informed

myeloma.org

Seek Information, Understand your options

 Use caution considering stories of personal experiences

 Your healthcare team members are resources

 Use reliable and current sources of information

IMF Website: http://myeloma.org

• Publications

• Videos and Replays

• Future Events, both in-person & virtual

Strategies: Be Involved In Your Care

 Consider your priorities

 Consider your goals/values/preferences

 Include your care partner/network in the discussion

 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 the plan, if needed

Strategies: Know The Members Of Your Team

Understand their different roles

 Myeloma specialist and General Heme/Onc

 Primary care: for health screening, general check ups, vaccinations

 Sub-specialists: specialty needs

Stay connected

 Keep a contact list of your providers

 Know who to contact for more information

Allied

Strategies: Prepare for Medical Visits

Prepare

 Medications: Bring a current list of prescribed and over-the-counter

 Questions: Prioritize questions & concerns including financial issues

 Paperwork needing medical signature (ex FMLA, prior authorizations)

Inform

 Updates: Medical or life changes since your last visit

 Symptoms: How have they changed (improved, worsened, stable)? Keep a symptom diary. Bring it along

 Communicate effectively so your health care team can help

Follow Up

 “Next Steps”: Future appointments, medication changes, plan of care. Ask for the information in writing or on your patient portal

Include a care partner, especially for pivotal appointments

Strategies: Prepare for Tele-Health Visits

Check with your healthcare team –

 Is telemedicine an option?

 What is the process and what technology is needed?

 Are labs needed in advance? Do you need an order?

Preparation is similar for “in-person” appointment PLUS:

 Location: quiet, well-lit location with strong Wi-Fi is best

 Yourself: Do you need to show a body part - wear accessible clothing

 Vital signs (blood pressure, temp, heart rate, weight) self-serve blood pressure cuff is available at many pharmacies and for purchase

Include a care partner, especially for pivotal appointments

Create a Care Network

 Care partners assist in many ways

Myeloma causes the highest burden of symptoms, most commonly effecting people of older age with other medical issues. Care partner support is valuable in SDM

 Attending medical appointments, being present to learn and discuss possible treatment options and alert the medical team of side effects to treatment

 Some treatment options available only if care partner support exists

 Care partners can be one person or a rotation of many people

 Building a partnership is based in good communication

 Finding the balance:

- helping the patient with needed activities while maintaining a sense of independence

- allowing the care partner to have time for good self-care

Key Take-Aways and Things to Think About

Over the next two days:

 Evaluate where you are at in the process (What decisions need to be made?)

 Absorb the information being presented (What are the options?)

 Consider how the information impacts you and your family (What are your preferences?)

 Create questions that will lead to better understanding (What more do I need to know before making a decision?)

 Be an active member of your health care team

Shared Decision Making

Myeloma 101: The Big Picture Perspective with Q&A

MM101: The Big Picture Perspective

City

Cancer

How common is Myeloma in the US?

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 ?

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

• MGNS = Neuro

Condition

Clonal plasma cells in bone marrow

MGUS1-4 (Monoclonal Gammopathy of Undetermined Significance)

SMM1-5,8 (Smoldering Multiple Myeloma) Active Multiple Myeloma6-8

Presence of Myeloma

Defining Events

Likelihood

* In clinical trial

Testing For Myeloma: Blood & Urine

Test Name

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)

What it means

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

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)

Healthy bone versus myeloma bone disease

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

Testing For Myeloma: Bone Marrow

Bone

Bone marrow genetics

• Cytogenetics

• Fluorescence in situ hybridization (FISH)

• Next generation sequencing (NGS)

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

What is (the importance of) Myeloma Staging & Risk Stratification?

Putting It Together

• Updated as new information becomes available

• Helps to guide therapy and measure response to treatment

• Provides some prognostic value

• Standardizes terminology in medical practice

High Risk FISH Results*

IMS/IMWG consensus on high risk myeloma definition

in more than 20% of sorted plasma cells

t(4;14) or t(14;16) or t(14;20) Gain/amp 1q

β2M ≥5.5mg/L (if creat <1.2mg/dL)

Avet-Loiseau et al. J Clin Oncol, in print, 2025

What is the Myeloma Treatment Landscape?

Initial Therapy (a.k.a. Frontline, Induction)

Quad Therapy (ex. CD38+ MoAb + VRd)

HD-Melphalan + Stem Cell

Transplant (ASCT)

Maintenance

Treatment for Relapse

Consolidation

Therapy

Supportive Care and Living Well

Treatment for Relapse

Treatment for Relapse

Treatment for Relapse

Treatment for Relapse

Drug Class Overview

(thalidomide)

(lenalidomide)

(pomalidomide)

Rev, Len

or Pom

(daratumumab)

(isatuximab)

Drug Class Overview

Peptide Drug Conjugate*

BCMA Targeted Antibody Drug

Conjugate (ADC)*

Pepaxto (Melphalan Flufenamide) Melflufen

Blenrep (belantamab mafodotinblmf )

Bela, Belamaf, or B

Abecma (idecabtagene vicleucel) Ide-cel

CAR T Cell therapy

Bispecific Antibodies

Carvykti (ciltacabtagene vicleucel) Cilta-cel

Tecvayli (teclistimab)

Talvey (Talquetamab)

Elrexfio (Elranatamab)

Linozyfic (Linvoseltamab)

Pipeline

Tec Talq Elra Linvo SC/IV

Cevostamab, Iberdomide, Mezigdomide, Venetoclax

Linvoseltamab, LCAR-B38M, ABBV-383 …………………………… MORE TO COME!

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

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

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.

Depth of Response Matters – MRD is becoming more important

MRD = Minimal Residual Disease

MRD refers to the persistence of residual tumor cells after treatment and is responsible for relapse1

Current techniques can detect MRD with a sensitivity of 10-6 for MM cells2

MR→PR→

VGPR→CR →sCR

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

Goals of Multiple Myeloma Therapy

Reduce the amount of M protein (as measured by serum protein electrophoresis) or light chains (as measured via the free light chain test) to the lowest level possible.

Eliminate myeloma cells from the bone marrow (as measured via minimal residual disease [MRD] testing).

Improve quality of life with as few treatment side effects as possible.

Provide the longest possible period of response before first relapse.

Prolong overall survival.

General Principles of Initial Therapy

1. Most patients will be given a combination of drugs to control the disease quickly- usually a QUADRUPLET

2. We don’t “save the best for last” because early therapies have a long term effect on survival

3. We seek a DEEP and DURABLE response

4. We mix and match from the 3 major classes of drugs and add steroids: Proteasome Inhibitors – most often botezomib (Velcade)

Immunomodulatory Drugs – lenalidomide (Revlimid)

Monoclonal Antibodies – daratumumab (Darzalex) and Isatuximab (Sarclisa)

5. We decide early on whether someone will have a stem cell transplant

Targets on the Myeloma Cell Surface and Therapeutic Antibodies

Bi-Specific Antibodies

Talvey (Talquetamab) CAR-T

Antibody Drug

Empliciti (Elotuzumab)

Bi-Specific Antibodies

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)

Other CAR Ts

Other Bi Specific Antibodies

Relapsing Nature of MM

1L = first line; 2L = second line; 3L = third line; 4L = fourth line; 5L = fifth line; LOT = line of therapy; MGUS = monoclonal gammopathy of undetermined significance; misc = miscellaneous; MM = multiple myeloma; M-protein = myeloma protein; SMM = smoldering MM.

Yong K, et al. Br J Haematol. 2016;175:252-264. Figure modified from Keats JJ, et al. Blood. 2012;120:1067-1076.

Principles of Relapsed Therapy

1. Depth of response matters

2. High risk vs standard risk - need more aggressive treatment in high risk

3. Balance efficacy and toxicity initially and constantly assess

4. Overcome drug resistance - change mechanism of action whenever possible

5. Shared decision making ensures patient preference is prioritized

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

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

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

The Process of CAR T Cell Therapy

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

What about Disease Control and Cure in Myeloma?

 Control is the immediate priority with active disease  Cure remains the overall goal

Defining “Cure” has many considerations:

 Minimal Residual Disease Negative (MRD-)  Time Off Therapy

 Functional Cure

Requiring Treatment Stable or Unmeasurable Disease, Receiving Treatment

Unmeasurable Disease, Receiving No Treatment Active Disease

CARTITUDE-1 Long-Term Remission:

One-Third of Patients Were Progression-Free for ≥5 Years

Overall population (N=97); median follow -up: 61.3 months

Progression-free survival

32 of 97 (33%) patients were treatment- and progression-free at ≥5 years

cilta-cel, ciltacabtagene autoleucel.

The Evolution of Myeloma Therapy

New

Belantamab or Bispecifics?

SCT +/- More induction

Lenalidomide

Bortezomib

Ixazomib

Lenalidomide + PI

Carfilzomib

Dara + Lenalidomide

Bortezomib

Lenalidomide

Carfilzomib

Pomalidomide

Selinexor

Panobinostat

Daratumumab

Ixazomib

Elotuzumab

Isatuximab

Idecabtagene autoleucel

Ciltacabtagene autoleucel

Teclistamab Talquetamab

Elranatamab Linvoseltamab

CAR T or Bispecifics?

Iberdomide, Belanatamab or Bispecifics?

Novel CAR T Cell Therapies

Bispecific/Trispecific Antibodies

Iberdomide and Mezigdomide

Venetoclax?

Belantamab soon?

Multiple small molecules ++++++++

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.

Navigating Insurance & Medical Bills

The slides presented at this meeting contain timely information and have been removed from sharing. For information on this topic please contact: Triage Cancer www.triagecancer.org

Emotional and Physical Wellbeing: Practical Nutrition Strategies for Optimizing Life with Multiple Myeloma

CNSC, LD

Mayo Clinic, Rochester, MN

Heimgartner.joy@mayo.edu

Goal

• To help patients and families appreciate nutrition goals across the continuum of MM care and learn practical strategies to help you live better with multiple myeloma

Topics

How dietitians think of care across the cancer continuum and how that is more complex in patients with MM

What are the most important nutrition concerns we have for patients with MM

The power of protein

The power of plants

How Dietitians Think About Nutrition & the Cancer Continuum

• Continuum loop : prevention > active treatment > survivorship

Prevention & Survivorship

• Before diagnosis and after active treatment

• Similar nutrition recommendations

• Goal is to optimize long term health and reduce risk of other diseases or cancers

Active Treatment

• Recommendations driven by treatment type and nutrition impact symptoms (NIS)

• Goal is to optimize the current body to withstand treatment and side effects to limit treatment interruptions, side effects and debility

Nutrition

recommendations may look very different during these phases…
And that is normal and expected - but can be confusing for patients.

Prevention & Survivorship

• Before diagnosis and after active treatment

• Similar nutrition recommendations

• Goal is to optimize long term health and reduce risk of other diseases or cancers

Active Treatment

• Recommendations driven by treatment type and nutrition impact symptoms (NIS)

• Goal is to optimize the current body to withstand treatment and side effects to limit treatment interruptions, side effects and debility

Most Important Nutrition Concerns

Tolerating

Tolerating treatment

• Fewer unplanned treatment breaks, dose reductions

• Limit treatment side effects

Maintaining Maintaining physical functionality

• Improve energy levels

• Maintain lean muscle

Preventing

Preventing longterm complications

• Protect heart health

• Optimize metabolic and endocrine health

• Bonus benefit: improve eligibility for future treatments

The Importance of Maintaining Lean Tissue (Preventing

Sarcopenia)

• Sarcopenia: loss of skeletal muscle mass, strength and function

• Age-related and disease-related

• Diminishes physical functioning

• Inhibits treatment tolerance

• Increases side effects

• Decreases quality of life

What Impacts Loss of Lean Muscle Tissue?

• https://youtu.be/pDSX_jaDCDM

Inadequate protein and/or calories

Rapid weight loss (for any reason)

Inflammation

Medications

Insulin resistance

Physical inactivity

Protein

• Quantity matters*

• 1.2 to 1.5 g/kg body weight daily – up to 2 g/kg/day

• 150 lb (68 kg) person: 81-102 g/day

• 200 lb (91 kg) person: 109-136 g/day

• Quality matters

• 65% animal sources during active treatment

• Timing matters

• 4 to 6 feedings per day

*patients with severe kidney impairment should talk to their medical team about if they need to limit protein intake

importance of protein sources to support muscle anabolism in cancer: An expert group opinion. Clin Nutr. 2022 Jan;41(1):192-201. doi: 10.1016/j.clnu.2021.11.032. Epub 2021 Nov 29. PMID: 34891022.

Ford KL, Arends J, Atherton PJ, Engelen MPKJ, Gonçalves TJM, Laviano A, Lobo DN, Phillips SM, Ravasco P, Deutz NEP, Prado CM. The

KL,

CM. The importance of protein sources to support muscle anabolism in cancer: An expert group opinion. Clin Nutr. 2022 Jan;41(1):192-201. doi: 10.1016/j.clnu.2021.11.032. Epub 2021 Nov 29. PMID: 34891022.

Ford
Arends J, Atherton PJ, Engelen MPKJ, Gonçalves TJM, Laviano A, Lobo DN, Phillips SM, Ravasco P, Deutz NEP, Prado

Plant Foods

• When nutrition impact symptoms (NIS) are well controlled, emphasize a plant-forward diet that meets calorie and protein needs

• Plant foods provide:

• Fiber

• Vitamins and minerals

• Phytonutrients

• Pre-biotic fibers to feed a healthy gut microbiome

• Volume for satisfying hunger

• NUTRIVENTION studies

Plant Foods (continued)

• 5 to 9 servings of vegetables and fruits daily

• Other plant foods: whole grains, nuts, seeds, beans

• Structured “diets” that can work as a starting point

• Mediterranean Diet

• Mayo Clinic Diet

• Whole Food Plant Based Diet

Habit Change 101

• Start small

• Focus on consistency not grand plans - “What can I do even on my worst day?”

• Create a supportive environment

• Built environment

• Social environment

• Be patient

• Just like MM, your habit change will be something you work on for the rest of your life

• Make it part of your identity

• Instead of “I’m not a vegetable eater” try “I am a person trying to diversify my gut microbes”

• Embrace the 80/20 rule

• Make the healthy choices MOST of the time, and over time you will improve

• It’s not about perfection, it’s about persistence: “All or something”

Walk through the IMF Website

Robin Tuohy, VP Patient Support

International Myeloma Foundation

Q&A WITH GUEST PANEL

Housekeeping Items

Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.

Program Evaluations: Please be sure to complete your program evaluation and return your evaluations at the end of the program or on your way out.

Restrooms: Turn left exiting the meeting room and bathrooms are on your left before the lobby Badge Holders: Please return your badge holders and we can recycle them

Wifi: Network – Marriott Bonvoy Conference, Password - patient104

Parking: Onsite parking in the South Lot is complimentary

We greatly appreciate your time and feedback!

IMF PATIENT AND FAMILY SEMINAR

CHICAGO AGENDA

SATURDAY MORNING

IMF PATIENT AND FAMILY SEMINAR

CHICAGO AGENDA

SATURDAY

AFTERNOON

Upcoming IMF Events

Living Well With Myeloma - Webinar

October 15, 2025

Regional Community Workshops

November 15, 2025 – Raleigh RCW – Sheraton Raleigh Hotel

Online Community Workshops

November 17, 2025

Patient and Family Seminars

March 13 - 14, 2026 – Boca Raton PFS – Marriott Boca

Raton at Boca Center

Thank you to our sponsors!

5:00 – 7:00 PM Welcome Reception

Please return to this ballroom

OUR VISION:

A world where every myeloma patient can live life to the fullest, unburdened by the disease.

OUR MISSION:

Improving the quality of life of myeloma patients while working toward prevention and a cure.

IMF Core Values:

These are the core values we bring to accomplishing our mission each day.

Patient Centric

The patient experience is the focus of everything we do. Every interaction is an opportunity to establish a personal connection built on care and compassion which is the basis for continued support.

Respect All

As a team, we value honesty and transparency while creating a culture of mutual respect. We foster a myeloma community built on sincerity, authenticity, and kindness.

Excellence and Innovation

We value accountability, personal responsibility, and a steadfast commitment to excellence. We respect the legacy and reputation of our organization while seeking new solutions and advancements to improve outcomes, quality of life, and access to the best available resources for everyone impacted by myeloma.

Honor differences

We recognize each team member's skills and talents through collaboration and cooperation. Our programs aim to celebrate and support the diversity of our patients and their communities.

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