2025 IMF PATIENT AND FAMILY SEMINAR
PHILADELPHIA, PA
MAY 2 & 3, 2025
Thank you to our sponsors!
IMF Program Evaluations
Please return your program evaluations on your way out – whether you stay for the full program, or only one session, your feedback is invaluable to our team. Thank you for taking the time completing this.
IMF PATIENT AND FAMILY SEMINAR
PHILADELPHIA
AGENDA
SATURDAY MORNING
Welcome & Announcements
Robin Tuohy, Vice President, Patient Support International Myeloma Foundation
IMF Update
Diane Moran, RN, MA, EdM CEO, Senior VP Strategic Planning, International Myeloma Foundation
Understanding Clinical Trials
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
Fireside Chat: What is the Future of Myeloma? With Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
BREAK
Breakout Sessions #1: Treating Myeloma
Breakout A: Newly Diagnosed: Frontline Therapy
Dan Vogl, MD, MSCE
Abramson Cancer Center, University of Pennsylvania, PA
Breakout B: Managing Relapsed Myeloma
Housekeeping Items
Presentation Slides: Are available by scanning the QR code, Instructions are on the QR code handout on each table.
Restrooms: Restrooms are located outside the ballroom to your right, past the stairs and down the hallway.
Badge Holders: Please return your badge holders and we can recycle them.
We greatly appreciate your time and feedback!
The IMF Support Group Team is Here For You!
Special Interest Groups
Special interest groups are designed as a supplemental support for specific populations of patients, in addition to their local Support Groups
Las Voces de Mieloma-founded in 2022
Designed for Spanish speaking patients only
Living Solo & Strong with Myelomafounded in 2022
Designed for patients without a care partner
High Risk Multiple Myeloma-founded in 2023
Designed to address the needs of the high-risk MM population
Care Partners Onlyfounded in 2024
Designed to address the needs and concerns of care partners
Veterans SIG-founded in 2025
For those who served our country
Smolder Bolder-founded in 2023
Created for people living with Smoldering Multiple Myeloma
MM Families-founded in 2021
For patients/care partners with young children
Philadelphia Multiple Myeloma Networking Group
Meets virtually on the 2nd Saturday of each month at 1:30 PM Eastern
Local Support Groups
Hackensack Multiple Myeloma Support Group
Meets virtually on the 3rd Thursday of each month at 10:30 AM Eastern
Central New Jersey Multiple Myeloma Support Group
Meets virtually on the 1st Wednesday of each month at 6:30 PM Eastern
Delaware Multiple Myeloma Support Group
Meets sometimes virtually on the 3rd Wednesday of each month at 6:00 PM & sometimes in-person on the 3rd Saturday of each month at 11:00 AM Eastern
IMF InfoLine
Connecting Patients to Resources…
Shortening “Time to Hope” for Over 1,000 First-Time Callers Each Year
Assistance with understanding lab results, terminology and disease state
Preparing for medical visits
Resource Information:
• Financial & Emotional Support
• Expert Myeloma Referrals
“Thank you so much for the informative conversation and all the time you spent listening and helping me decipher the MM lingo. What an amazing service!”
“Thank you for your response and excellent question suggestions for my hematology team.”
Written Education
Understanding Booklets
Tip Cards
Myeloma Minute Weekly Updates
Myeloma Today Quarterly News
Live Patient Education
local myeloma experts
2025 Live Patient Education
Patient & Family Seminars
• Boca Raton, FL – March 14 – 15
• Philadelphia, PA – May 2 – 3
• Los Angeles, CA – August 15 – 16
• Chicago, IL – October 3 – 4
Myeloma Community Workshops
• Virtual - March 4
• San Francisco, CA - March 29
• Atlanta, GA - April 5
• Edina, MN - April 26
• Denver, CO - June 21
• Virtual – July 29
• Seattle, WA - August 9
• Waltham, MA - September 27
• Raleigh-Durham, NC - November 15
• Virtual – November 18
Scan for Upcoming Events!
Diane Moran, RN, MA, EdM Chief Executive Officer
Sr VP
Strategic Planning
with the IMF since April 2006
900,000 + views
• Support Groups
• InfoLine
• PFS
• RCW
3600 Nurses serving 23,000 patients with MM
• Nurse Leadership Board
• ONS Symposium
• Myeloma University
InfoLine Support groups GMAN Members IMWG Members
A world where every myeloma patient can live life to the unburdened by the disease.
Fireside Chat: What is the Future of Myeloma? With Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer ,International Myeloma Foundation
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center MedStar Georgetown University Hospital
Understanding Clinical Trials
Joseph Mikhael MD, MEd, FRCPC, FACP, FASCO Chief Medical Officer, International Myeloma Foundation
Professor, Translational Genomics Research Institute, City of Hope Cancer Center
Provide The Rationale For Clinical Trials
Objectives
Outline The Phases Of Clinical Trials
Discuss The Risks And Benefits Of Clinical Trials
Clinical Trials - Overview
Some Of The Important Principles Of Clinical Trials:
The drive of research has brought us to where we are
No one is expected to be a “guinea pig” with no potential benefit to them
Research is under very tight supervision and standards
Open, clear communication between the physician and the patient is fundamental Driving research forward!
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
Clinical Trials: Myths
• 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 8d31600a4%7C35221aa8-d487-4db3-9416-b9c3c35e3bac
.
Clinical Trials – Why Me??
Every patient is unique and must be viewed that way
Benefits of trials are numerous and include:
Early access to “new” therapy
Delay use of standard therapy
Contribution to myeloma world – present and future
Financial access to certain agents
Must be balanced with potential risks
“Toxicity” of side effects
Possibility of lack of efficacy
Overview of New Drug Development
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 effectiveness
The whole process costs millions of dollars and years of effort!
Even Before Phase I
Most agents are tested in lab models
Various “myeloma cell lines”, also known as “in vitro”
Next step is animal model
We are more like mice than you think!!
Earliest study in Phase I is called “First in Human”
Often uses extremely low dose of drug to ensure safety
Phase 1 Clinical Trials
All patients receive the experimental therapy
Phase 1 trials find the optimal dose of a new drug or drug combination
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
Important for all stages of myeloma
Phase 2 Clinical Trials
Determine if a new drug or combination is effective against the cancer
May be added to a Phase 1 study once the ideal dose is found
Patients usually receive the experimental therapy
In some cases, the study may include two “arms” comparing either two different doses or a different treatment (another combination of drugs)
Phase 3 Clinical Trials
Highest form of clinical evidence. Typically, a large number of patients are required…usually required for full FDA approval
Patients receive either an experimental therapy (one or more drugs) or the current standard treatment
o The patient is randomly assigned to a treatment—a process called “randomization”
o Neither the physician or the patient can determine which treatment is given
May be placebo controlled, if no standard treatments are available
Very closely monitored for effectiveness and side effects
Preclinical
Clinical Trial Phases
ANIMAL STUDIES: Examine safety and potential for efficacy
PHASE 1
PHASE 2
FIRST INTRODUCTION OF AN INVESTIGATIONAL DRUG INTO HUMANS
• Determine metabolism and PK/PD actions, MTD, and DLT
• Identify AEs
• Gain early evidence of efficacy, studied in many conditions; typically, 20 to 80 patients; everyone gets agent
EVALUATION OF EFFECTIVENESS IN A CERTAIN TUMOR TYPE
• Determine short-term AEs and risks; closely monitored
• Includes up to 100 patients, typically
PHASE 3
GATHER ADDITIONAL EFFECTIVENESS AND SAFETY
PHASE 4
INFORMATION COMPARED TO STANDARD OF CARE
• Placebo may be involved if no standard of care exists; hundreds to several thousand patients
• Often multiple institutions; single or double blind; sometimes open label
APPROVED AGENTS IN NEW POPULATIONS OR NEW DOSE
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
Possible risks:
• 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
Why Do So Few Cancer Patients Participate in Trials?
Patients 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
• Be unwilling to go against their physicians’ wishes
• Not have physicians who offer them trials
• Have a disconnect with their healthcare team
Diversity in Clinical Trials
There has been a lack of diverse representation in clinical trials in myeloma.
In the U.S., approximately 20% of all myeloma patients are of African descent, but only 5%–8% of patients in myeloma clinical trials are of African descent.
This is significant for the following reasons:
All patients of all races and ethnicities should be able to benefit from clinical trials.
Diverse patient representation in clinical trials is required to ensure that the outcomes are applicable to all patients.
Reasons for underrepresentation in clinical trials are complex and include:
Systemic racism, accessibility of clinical trials, sensitivity to diversity by medical professionals
Misconduct in medicine in the past, the lack of trust in the system, and more.
Importance of Clinical Trial Participation by Diverse Populations
[P]eople 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
Commonly Asked Questions
How does the study work? How often will I need to see my doctor or visit the cancer center?
Will I need to undergo additional tests?
What is currently known about the new drug or combination?
What benefits can I expect?
What side effects should I expect? Who should I notify if I have side effects?
Can I take my vitamins or other medications?
Can I get the treatment with my local doctor?
Will my insurance pay for my participation in the clinical trial?
Is A Clinical Trial Right For Me?
Discuss with your physician if you are eligible for a clinical trial
Work with your physician to determine the best trial for you
Meet with the clinical research nurse or trials coordinator to discuss the trial
Carefully review the provided “Informed Consent” Describes the study and any potential safety concerns related to the experimental medication
Clinicaltrials.gov https://clinicaltrials.gov/
ncreasing-diversity-in-cancer-clinical-research
Panel Q&A
Fireside Chat: What is the Future of Myeloma? With Q&A
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer ,International Myeloma Foundation
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center MedStar Georgetown University Hospital
BREAK
WHEN YOU RETURN FROM BREAK PLEASE HEAD TO YOUR SELECTED BREAKOUT SESSION:
BREAKOUT A: NEWLY DIAGNOSED: FRONTLINE
THERAPY
Please move to Aria B
BREAKOUT B: MANAGING RELAPSED MYELOMA
Please remain in this room
Thank you to our sponsors!
Breakout B: Managing Relapsed Myeloma
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
Managing Relapsed Myeloma
David Vesole, MD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
2025 IMF Philadelphia Patient and Family Seminar
Objectives
At the conclusion of this presentation, you should be better able to:
1) Know what is considered early and late relapsed/refractory multiple myeloma
2) Know the options available to treat patients with relapsed/refractory multiple myeloma.
3) Know what to expect on CAR-T cell therapy or with a bi-specific Tcell engager for relapsed/refractory myeloma.
Multiple Myeloma: The Malignant Plasma Cell
– Produce large quantities of abnormal antibodies:
– monoclonal or M proteins, – light chains (Bence-Jones)
– Crowd out and impair production of normal blood cells and antibodies
• Fractures
• Osteoporosis (or osteopenia)
Osteolytic Bone Disease Occurs in 80% of patients
• Plasmacytoma (soft tissue tumor) of the bone
Immunoglobulins are antibodies produced by plasma cells
Survival Continues to Improve for Patients with Multiple Myeloma
Improvement in Survival of Multiple Myeloma Patients: A Long-Term Institutional Experience, Blood, 2019,
Jordan Nunnelee, BA,Qiuhong Zhao, MS,Don M. Benson, Jr., MD PhD,Ashley E. Rosko, MD,Maria Chaudhry, MD,Naresh Bumma, MD,Abdullah Mohammad Khan, MBBS,MSc,Srinivas Devarakonda, MD,Yvonne A. Efebera, MD MPH,Nidhi Sharma, PhD,
Terms to Understand if Myeloma Comes Back
• Relapsed: Reappearance of the disease
• Refractory: Treatment that someone is currently taking no longer works.
• Progression: Increase in tumor markers from the blood or urine tests (M-spike or light chains), OR an end-organ symptom (bone lesion, high calcium).
• Line of therapy: Change in treatment that is not working or has unmanageable side effects
(Note: induction therapy + stem cell transplant + maintenance is ONE line of therapy)
Early versus Late Relapse
Early relapse
Myeloma returns after 1 to 3 prior lines of therapy
Late relapse
Myeloma returns after 4 or more prior lines of therapy
Triple Class Refractory Multiple Myeloma
• Disease progression (by serum or urine markers or by symptoms)
• While on or within 60 days of a
Proteasome inhibitor
• Bortezomib
• Carfilzomib
• Ixazomib
Immunomodulator
• Thalidomide
• Lenalidomide
• Pomalidomide
Anti-CD38
Monoclonal Antibody
• Daratumumab
• Isatuximab
Treatments for Relapsed and Refractory Myeloma
Proteasome Inhibitors
IMiDs Chemotherapy and Steroids
Bortezomib
Lenalidomide
Carfilzomib
Thalidomide
Ixazomib
Pomalidomide
KD-PACE/VDPPACE/VDR-PACE/ BEAM
Bi-Specific TCell Engagers Small Molecule Inhibitors
BCMA: Teclistimab
Elranatamab
Cyclophosphamide
Melphalanlow/high dose
Bendamustine*
Dexamethasone, prednisone, solumedrol
GPRC5D: Talquetamab
Selinexor (XPO-1 inhibitor)’
Venetoclax* (BCL2inhibitor)
Mono-Abs or AntibodyDrug Conjugates
Daratumumab (CD-38)
Isatuximab (CD38)
Elotuzumab (SLAM-F7)
Belantamab (BCMA-ADC)*
Panobinostat
Treatments for Early Relapsed/Refractory Myeloma (1-3
prior lines)
Triplet drug combinations
Early relapse
After 1 to 3 prior therapies
CAR T-cell therapy
(If rev-refractory)
Clinical trials
How do we decide?
• Rate of progression
• FISH and mutation status
• Presence or absence of symptoms
• Patient’s other conditions (comorbidities)
• Social situation – distance from cancer center, social support, financial situation, driving ability
• Prior treatment history – what worked before may work again
Treatment Options for
Early Relapse Myeloma, continued (1-3 prior lines)
Triplet combination examples
If you are refractory to… Your specialist might recommend…
Daratumumab or Isatuximab
Carfilzomib + Lenalidomide/Pomalidomide + Dexamethasone
Bortezomib
Isatuximab + Carfilzomib + Dexamethasone
Lenalidomide
Daratumumab+ Ixazomib or Pomalidomide+ Dexamethasone
Treatments for Late Relapsed/Refractory
Myeloma (4 or more prior lines)
Triplet/quad regimens
CAR T-cell therapy
Late relapse
After 4 or more prior therapies
Bispecific Antibodies
How do we decide?
• Rate of progression
• FISH and mutation status
• Presence or absence of symptoms
• Patient’s other conditions (comorbidities)
• Social situation – distance from cancer center, social support, financial situation, driving ability
• Prior treatment history – what worked before may work again
Clinical trials
prior lines of
CAR-T Cell Therapy
What is CAR-T Therapy?
• Your body’s own T-cells are removed from the body and modified to have the ability to find and destroy multiple myeloma cells.
• The CAR-T cells, once modified, target a protein called BCMA on the myeloma cells.
• There are 2 FDA approved CAR-T cell therapies: Ide-cel (Abecma) and Cilta-cel (Carvykti).
B-cell Maturation Antigen (BCMA)
is an Important Target in Multiple Myeloma
Timeline of CAR-T cell Development in Multiple Myeloma
CAR-T Cell Therapy
In myeloma-CAR-T cells target myeloma-specific antigens, i.e. BCMA
Steps Involved with CAR-T Cell Therapy and What to Expect
1) T-cell collection – One time only
2) CAR-T cell manufacturing – Entire process takes several weeks. Bridging therapy (to treat the myeloma) may be required.
3) Lymphodepletion chemotherapy – Treatment to make room for the CAR-T cells.
4) CAR-T infusion – Hospitalization times may vary.
5) Post-CAR-T cell monitoring – Caregiver is necessary for at least 4 weeks after treatment. Side effects and disease monitoring will occur.
Expected Side Effects from CAR-T Cell Therapy
Side Effect Symptoms
Cytokine release syndrome (CRS)
• Fever
• Difficulty breathing
• Dizziness
• Nausea
• Headache
• Rapid heart beat
• Low Blood pressure
Neurotoxicity (ICANS)
• Headache
• Confusion
• Language disturbance
• Seizures
• Delerium
• Brain Swelling
Onset After CAR T-Cell Infusion
Duration Management
1–9 days
5–11 days
• Actemra (tocilizumab)
• Corticosteroids
• Supportive care
2–9 days
3–17 days
• Antiseizure medications
• Corticosteroids
Cytokine Release Syndrome
Hygiene and Environment
CAR-T Cell Therapy
Can Lower White Blood Cells and Immunoglobulins
Possible Transfusions
Preventative Antiviral Medication
Infection Prevention
Vaccinations
In some cases, preventative antibiotics and antifungals
Monthly IV
Immunoglobulin
Usmani
CARTITUDE-4: Cilta-cel in 1-3 Prior LOT
Dhakal B et al. ASCO 2023. Abstract LBA106. Einsele H et al. EHA 2023. Abstract S100.
Bi-Specific Antibody Therapy
Bispecific Antibody Therapy
Monoclonal antibody that can simultaneously bind to 2 different cell surface markers: one on the myeloma cell and one on a patient’s T-cells
CD3 CD3
GPRC5D
Tecvayli
Potential Benefits of Bispecific Antibodies over
Readily available Precise dosing
CAR-T therapy
Broad range of myeloma targets
Reduced rates of CRS and neurotoxicity Retreatment has been successful
What to Expect with Bispecific Antibodies
• Administration is by an injection under the skin.
• To minimize side effects and to monitor closely, the first 2-3 doses are administered in the hospital.
• Requires ongoing administration until disease progression or unacceptable side effects.
• If CRS occurs – tocilizumab can be used.
• If neurologic toxicity occurs – dexamethasone can be used.
FDA Approved BCMA x CD3 Bispecifics: 1) Teclistimab
2) Elranatamab
Elranatamab in relapsed or refractory multiple myeloma: Phase 2
MagnetisMM-3 trial results
Lesokhin A et al, Nature Medicine, Aug 15 2023.
Common Side effects with BCMABispecific Antibodies
• Cytokine release syndrome
• Neurotoxicity
• Low blood counts
• Infections
Some Important Differences between CAR-T and Bispecific Antibodies
Number of Infusions Single Continuous administration until progression
Hospitalization Required? Yes Yes in most institutions
Dependent on T-cell health? Yes, can have manufacturing failures Yes, may not be as effective with T-cell exhaustion
Bridging therapy needed? Yes, most of the time No
Caregiver needed? Yes No
Next steps: More Effective Antibodies, Fixed Duration Therapy, and Novel Targets
• LINKER-MM1 Study: Update shows 46% Complete Remission rate with the BCMA x CD3 bispecific antibody linvoseltamab.
• BMS986393 Study: CAR-T cell with a novel target against GPRC5D shows promising efficacy. Off-target effects include taste changes (18%), skin changes (20%), CRS (85%) and ICANS (10% and dose related).
• Arcellix CART-ddBCMA study: Specifically engineered to reduce side effects and improve efficacy. Early studies show 75% CR rate.
Triple Class Refractory: Agents Being Evaluated in Clinical Trials
Monoclonal Antibodies and ADCs
TAK-079 (high-affinity CD38)
TAK-169 (CD38 fused with shiga-like toxin payload)
STRO-001 (CD74 ADC) FOR46 (CD46 ADC)
Indatuximab/BT062 (CD138-DM4 toxin)
CELMoDs/small molecule inhibitors
BiSpecifics in Combinations
Cellular Therapies
Iberdomide (cereblon E3 ligase)
CCC-92480 (cereblon E3 ligase)
Venetoclax (bcl-2)
BCMA x CD3: AMG-701
CC-93269
REGN5458
Elranatamab
GPRC5D x CD3
Talquetamab
Orva-cel LCAR-B38M Lummicar-2
ALLO-715
Descartes-011 and -018
• Oral, potent novel CRBN E3 ligase modulator compound that co-opts Cereblon to enable enhanced degradation of target proteins including Ikaros and Aiolos
• Active in revlimid and pomalidomide-resistant myeloma cell lines and enhances cell mediated killing through immune stimulation.
Matyskiela ME et al, J Med Chem 2018; 61:535-42. Bjorklund CC, et al,. Leukemia. 2020:34:1197-1201.
Iberdomide in combination with daratumumab, bortezomib and
Venetoclax + Dara + Dex versus Bortez + Dara Dex
Common Side Effects Associated with Venetoclax
• Low blood counts
• Infections, in particular upper respiratory infections and pneumonia
• Nausea and decreased appetite
Bispecific Antibodies on the Horizon
Belantamab likely to be FDA
Approved
MA, et al. NEJM, June 1, 2024.
DREAMM-8: Belantamab + pomalidomide + dex versus Pomalidomide + Bortezomib + dex
Dimopoulos
Goals for Treatment for Relapsed Myeloma
• Improve symptoms
• Obtain a deep response
• MINIMIZE side effects, have a pro-active approach to reducing infections
• Use your best therapy early rather than reserve for later
• Consider Clinical Trials
Supportive Care is an Essential Part of Relapsed/Refractory Myeloma
Bisphosphonates for Myeloma Bone Disease
How they work
• Prevent bone disease from getting worse
Benefits
• Decreases pain and reduces skeletal related fractures
• IV infusion in doctor’s office every 3–4 weeks
• Kidney function can alter dosing or choice of drug
• Zometa (zoledronic acid): 15-minute infusion
• Aredia (pamidronate): 2-hour infusion
• Reduced kidney function
• Fracture of the femur
• Osteonecrosis of the jaw (ONJ)
• Low calcium levels (hypocalcemia)
Approved Agents For Bone Loss: Denosumab (XGeva)
Newly diagnosed MM patients
859 patients
Xgeva (denosumab)
859 patients R
Zometa
• Both equally effective in delaying a skeletal-related event
• Fewer side effects related to kidney toxicity with Xgeva
• Risk of ONJ is similar in both medications (1.2% higher risk with Xgeva)
Raje NS et al. J Clin Oncol. 2017;35: Abstract 8005. Terpos E et al. Haematologica. 2017;102: Abstract S782.
Reducing
the Risk of ONJ: Oral Health Recommendations
• Complete major dental work before beginning bisphosphonate therapy
• Practice good oral hygiene
• Schedule regular dental visits
• Inform the dentist re use of bisphosphonates/RANK-L inhibitor
• Keep oncologist informed of dental issues
Summary
• Relapsed or refractory myeloma occurs when myeloma recurs or is no longer responsive to treatment.
• Therapy choices will depend on the biology of the disease as well as patient factors and will be decided on by the physician, patient and caregivers.
• CAR-T and bispecific antibodies result in high response rates even in patients who have received several prior therapies.
• CAR-T can be used earlier in the lines of therapy whereas bispecific antibodies are approved for >4 prior lines.
• Side effects can be short or longterm and have to be managed in a multi-disciplinary approach.
• Clinical trials should also be considered in the relapsed setting.
LUNCH
Located on the Mezzanine Level
in “Balcony”
Advocacy
Update:
What you need to know
Danielle Doheny, Director of Public Policy and Advocacy
International Myeloma Foundation
Advocacy Overview and Medicare Changes in 2025 & Beyond
Danielle Doheny IMF, Director of U.S. Policy & Advocacy
Introduction | Advocacy at the IMF
The Global Advocacy Team collaborates with multiple stakeholders to inform and influence decision-making on the critical healthcare issues that directly impact myeloma patients.
The U.S. Advocacy Team advocates for equitable access to timely diagnosis, innovative treatments and research on Capitol Hill and with key regulatory
The team advocates both alongside of and on behalf of the patient community that we serve.
Advocacy play a critical role to educate policymakers about the issues important to our community and motivate them to act.
What Do We Advocate For?
The following policy principles are the foundation on which we prioritize our advocacy work.
1. Ensure Access to Care: We advocate for policies that ensure all myeloma patients have equitable, comprehensive, patientcentered 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.
2025 U.S. Advocacy Priorities Snapshot
1. ENSURE ACCESS TO CARE
2. ELIMINATE FINANCIAL BARRIERS
3. ADVANCE MYELOMA RESEARCH
INSURANC E REFORM: DRUG ACCESS
Step Therapy Protocols Safe Step Act
INSURANC E REFORM: COINSURANCE
Oral Parity Cancer Drug Parity Act
INSURANC E REFORM: DRUG ACCESS PBM Reform PBM Reform Act
INSURANC
E REFORM: COPAYS Copay Accumulators HELP Copays Act
FEDERAL FUNDING
ANNUAL APPROPS
Annual Appropriations
NIH: National Cancer Institute, National Institute on Minority Health, ARPA-H
CDC: Comprehensive Cancer Control Initiative
DoD: Congressionally Directed Medical Research Program (CDMRP) for Myeloma.
MEDICARE REFORM:
PHYSICIAN ACCESS
Tele-Health/Medicine
Telehealth Modern. Act
MEDICARE REFORM: ANNUAL COST LIMITS
Inflation Reduction Act implementation Cap & Smoothing (MPPP), Drug Pricing, Drug Formularies
CLINICAL
TRIAL DIVERSITY
Primary care education, Focus on underserved, POC, rural settings and socioeconomically disadvantaged groups
Medicare Changes Detailed | A Phased Approach
No copays for vaccines under Part D
Insulin copays limited to $35/month
Expanded eligibility for the Extra Help Program
(Federal Low-Income Subsidy) to help pay premiums, deductibles, coinsurance & other costs
$3,250 annual cap (approx.) on out-of-pocket spending for prescription drugs under Part D (eliminating 5% coinsurance in catastrophic phase)
$2,000 annual cap on out-of-pocket spending for prescriptions under Part D
Option for a monthly payment program to “smooth out” total out-of-pocket spending throughout the year, with an overall monthly maximum
• Patients will need to enroll in the program (opt-in)
• The earlier in the year you join the program, the more you can benefit
• Your monthly bill may fluctuate somewhat
• No one will pay more than $2000 for the year
Inflation Reduction Act (IRA) & Highlight of Changes to Medicare
The Inflation Reduction Act (IRA) of 2022 is a federal law which aims to curb inflation by working to reduce the federal government budget deficit, lowering Medicare prescription drug prices and investing in domestic energy production.
1.
3.
• Inpatient hospital stays
• Care in a Skilled Nursing Facility
• Hospice Care
• *Does not cover regular MD visits or Rx drugs
What is Happening With Research Funding?
Addressing healthcare barriers for multiple myeloma patients depends on winning over the hearts and minds of policymakers.
It is not enough to just identify an issue and have data-driven evidence/research to back it up. It is not even enough to work with coalition partners that agree with our point of view. We must convince policymakers to prioritize our issues, draft legislation and vote it into law.
Join Us! Join the Advocacy Team and share Your Story.
Thank You
Putting the Pieces of the Puzzle Together
Patricia Mangan, RN, MSN, APRN-BC
Abramson Cancer Center, University of Pennsylvania
Myeloma: Putting the Pieces of the Puzzle Together
Patricia Mangan, RN, MSN, APRN-
BC University of Pennsylvania, Abramson Cancer Center Philadelphia, Pennsylvania
A presentation from the IMF’s Nurse Leadership Board
Myeloma: Putting The Pieces of the Puzzle
Focus on Managin g Sympto ms
Myeloma: Putting The Pieces of the Puzzle
Myeloma Is a Cancer of the Plasma Cells
Plasma Cells come from white blood cells produced in the bone marrow and make 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 &
Anxiety
Stress
Depression
Decreased red blood cells
Anemia & Fatigue
Decreased white blood cells
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)
Immune Dysfunction & Infection
Renal Dysfunction
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
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 (i.e., 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
Prevention
Sources of pain include bone disease, neuropathy and medical procedures.
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
Myeloma: Putting The Pieces of the Puzzle
Managin g Sympto ms
Treatment of Newly Diagnosed Multiple Myeloma (NDMM)
Induction
Consolidation
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
Induction Standard of Care
Induction
Quadruplet therapy is preferred for nearly all patients with newly diagnosed myeloma
Anti-CD38 monoclonal antibody (mAb)
• Darzalex (daratumumab)
• Sarclisa (isatuximab)
Proteosome
Inhibitor (PI)
• Velcade (bortezomib)
• Kyprolis (carfilzomib)
Immunomodulator
y drug (IMiD)
• Revlimid (lenalidomide)
• Pomalyst (pomalidomide)
Steroid
• Decadron (dexamethasone)
• Prednisone
At infusion clinic: subcutaneous injection 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 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
Steroid Side Effects
• Irritability, mood swings, depression
• Blurred vision, cataracts
• Increased risk of infections, heart disease
• Muscle weakness, cramping
• Increased blood pressure, water retention
• Difficulty sleeping (insomnia), fatigue
Managing Steroid Side Effects
• Flushing/sweating
• Stomach bloating, hiccups, heartburn, ulcers, or gas
• Weight gain, hair thinning/loss, skin rashes
• Increased blood sugar levels, diabetes
Consistent schedule (AM vs. PM)
Take with food
Stomach discomfort: Over-thecounter 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
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.
Blood Clots: Managing DVT and PE Risk
Blood clots can cause swelling, pain, discoloration (DVT), shortness of breath, chest pain, sense of doom (PE). Blood clots
► 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)
DVT=Deep Vein Thrombosis; PE=Pulmonary
Embolism
are serious and can be life threatening.
Family History
Obesity
Immobility
Smoking
Surgery
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
Stem Cell Transplant
ELIGIBILITY
P H A S E 1
Measuring treatment response
Testing for Eligibility
Insurance authorization
Collecting stem cells
Duration: Approximately 2 weeks
Location: Transplant Center
A S E 2 TRANSPLANT
P H
HD-Melphalan
Stem cell infusion
Supportive Care
• GI Management
• Transfusions
• Antibiotics
Hair Loss
Engraftment
Duration:
Approx. 3-4 weeks
Location:
Transplant Center
P H A S E 3
POSTTRANSPLA NT
Restrengthening
Appetite recovery “Day 100” assessment
Begin maintenance therapy
Duration: Approximatel y 10-12 weeks
Location: HOME
stem cell transplant remains the standard of care for eligible patients
Miceli T and Steinbach, M. Multiple Myeloma: A Textbook for Nurses. 2021. NCCN Guidelines. Multiple Myeloma. V1.2025.
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
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
Increase fiber
Stay well hydrated
Fruits, vegetables, high fiber whole grain foods
Fiber binding agents – Metamucil® ,
Citrucel®, Benefiber®
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.
Myeloma: Putting The Pieces of the Puzzle
Relapsing Nature of Myeloma
Adapted from Durie B. Keats JJ, et al. Blood. 2012;120(5):1067-1076.
Many Treatment Options at Relapse
Myeloma Therapies Common Combinations
Belantamab mafodotinb 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
Ixazomib IRd
Lenalidomide
VRd, Rd, KRd, Dara-Rd, ERd, IRd
Pomalidomidea Pda, Dara-Pd, EPda, PCdb
Selinexor Xd, XVd, XKdb, Dara-Xdb
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
a2 or more prior therapies. bOff-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.
Rajkumar SV. 2024 Myeloma Algorithm. https://clinicaloptions.com/CE-CME/oncology/2024-mm-algorithm/18440-26989. Accessed 12.14.24. NCCN Guidelines®. Multiple Myeloma. V3.2024. Accessed March 15, 2024. Noonan K, et al. J Adv Pract Oncol. 2022;13(suppl 4):15-21. Steinbach M, et al. J Adv Pract Oncol. 2022;13(suppl 4):23-30. Moreau P, et al. Lancet Oncol. 2021;22(3):e105-e118. O’Donnell EK, et al. Br J Haematol. 2018;182(2):222-230. Mo CC, et al. EJHaem. 2023;4(3):792-810. Chang D. et al., Blood 2024, Abstract 2287.
CAR T Cell Therapy
BCMA target
• Abecma (Ide-Cel)
• Carvykti (Cilta-Cel)
1
Relapsed MM with 1-2 prior LOT Bridging therapy, if needed; Lymphodepleting therapy when CAR T cells are ready T Cell Infusion Close monitoring and Management of side effects
T-Cell Engager (TCE) Therapies
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.
3
2 a 2 b 4 5 HOME ! Apheresis to Collect T Cells T Cell Manufacturi ng
Bispecific antibodies
• About 7 in 10 patients respond
• Off-the-shelf treatment; no waiting for engineering cells
BCMA target: greater potential for infection
• Tecvayli® (teclistamab)
• Elrexfio™ (elranatamab)
Bispecific antibody
GPRC5D target: potential for skin and nail side effects, GI issues of taste change, anorexia and weight loss
• Talvey™ (talquetamab)
BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; GPRC5D = G protein–coupled receptor, class C, group 5, member D; MM = multiple myeloma; scFV = single chain fragment variable.
CAR T= Chimeric Antigen Receptor T Cell; LOT = Lines of
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. Yu B, et al. J Hematol Oncol. 2020;13:125.
CAR T and Bispecific Antibodies: Known Side Effects
CYTOKINE RELEASE
SYNDROME
• Fever
• Fatigue & Weakness
• Headache
• Nausea/Vomiting/Diarrhea
• Chills
• Low blood pressure
• Rapid heart rate
CRS is a common but often mild & managea ble side effect
Neurotoxicity is a rare but a serious side effect
• Difficulty breathing PREVENTION AND MANAGEMENT
• Disease management to reduce tumor burden
• Bispecific Step-Up Dosing (SUD)
• Tocilizumab
• Steroids
• Anti-Seizure medications
• Intravenous Immunoglobulin (IVIG)
• Close monitoring
ICANS AND NEUROTOXICITY
• Headache
• Difficulty concentrating
• Lethargy
• Agitation
• Hallucinations
• Tremors
• Aphasia (difficulty with speech, reading, writing, or understanding language)
• Confusion
• Memory loss
• Personality change
• Delayed Neurotoxicity can include Parkinsonism, Cranial Nerve Palsies and Peripheral Neuropathy/Guillan Barré syndrome (GBS)
CAR = chimeric antigen receptor. ICANS = Immune Effector Cell-Associated Neurotoxicity Syndrome Brudno JN, Kochenderfer JN. Blood. 2016;127(26):3321-3330. Lee DW, et al. Biol Blood Marrow Transplant. 2019;25:625-638. Kumar, et al. Blood (2024) 144 (Supplement 1): 4758.
Infection: Medications Can Mitigate 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
PJP (P. jirovecii pneumonia)
Fungal infections
COVID-19 and Influenza
Consider prophylaxis with levofloxacin
Consider prophylaxis with trimethoprimsulfamethoxazole
Consider prophylaxis with fluconazole
Antiviral therapy if exposed or positive for covid per institution recommendations
IgG < 400 mg/dL (general infection risk) IVIg recommended
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
Weight, GI Symptoms & The Drugs That Affect Them: Prevention
& Management
Anorexia (difficulty eating) Weight loss
• ASCT
• GPRC5D therapy
Steroids Weight gain, fluid retention
Excess hunger ASCT
GPRC5Ddirected therapy Opioids
Weight Loss
Weight Gain
Weight Management
• Monitor weight for significant loss or gain
• Adjust diet (reduce calories or add supplements )
• Work with a dietician
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.
Management of Oral Side Effects
Xerostom
ia
OTC dry mouth rinse, gel, spray are recommended. Avoid hot beverages. Anti-fungal therapy for oral thrush.
Dysgeusi a
Dysphagi a
=Dry Mouth =Difficulty Swallowing =Taste Change
Dexamethasone oral solutions “swish and spit” may provide benefit. Sour citrus or candies before meals are also recommended.
Dental
Care
Attention to oral hygiene.
Regular dental cleaning and evaluation. Close monitoring for ONJ, oral cancer and dental caries
Dietary modifications with small bites, eating upright, and sips with food can help manage symptoms
Weight Monitorin g
Some medications lead to weight gain, others to weight loss. Meet with a Nutritionist
Consider diet changes, supplements
Work closely with your entire health care team to manage oral side effects.
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
Myeloma: Putting The Pieces of the Puzzle
Fatigue, Anxiety and Depression
Fatigue Depression Anxiety
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.”
>35% of patients ≈25% of patients
More Pieces to 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 Complementary or alternative therapy
• 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: mammography, pap smear
Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Dimopoulous M, et al. Leukemia. 2009;23(9):1545-56.
• Men specific: prostate
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/stressful
• Encourage care partners to maintain their health, interests, and friendships
• The IMF has information and resources to help care partners
“Thank You!”
From the NLB and the IMF
Closing the Gap: Health Disparities in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer, International Myeloma Foundation
What are Health Disparities?
•Health disparities are preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations
- Centers for Disease Control (CDC)
•Health equity generally refers to individuals achieving their highest level of health through the elimination of disparities in health and health care
This Photo by Unknown Author is licensed under CC BY-NC
What
A Call to Action Facts About Disparities in Myeloma
M-Power = Myeloma Power
The core vision of this initiative is to improve the short- and long-term outcomes for African American patients with myeloma.
We want to empower patients and communities to change the course of myeloma…
Enhance access to optimal care by educating myeloma providers about the disparity and how to reduce it
Engage the community to increase awareness and provide support
Shorten the time to diagnosis by educating primary care providers to recognize the disease and order the right tests
M-Power Is Both a National and Local Movement
2024 M-Power Community Workshops
April 2024
Multiple cities in Indiana
Annual Indiana Black Barbershop Health Initiative
• Health screenings for Black men on the 1st and 2nd Saturdays in April
• Shared materials on myeloma and M-Power for distribution in 18 barbershops in Evansville, Elkhart, and South Bend
June 20, 2024
New York, New York
50+ attended
76% African American
• 86% planned to share something they learned with their family, friend or healthcare provider
• 100% of attendees rated the program as excellent to very good
September 5, 2024
Charlotte, North Carolina
October 10, 2024
Richmond, Virginia
Primary Care Physician Dinner Meeting
• Presenting on multiple myeloma to the diverse community of healthcare professionals during the quarterly meeting of the Charlotte Medical Dental Pharmaceutical Society
40+ Attended
81% African American
• 88% plan to share something they learned with their family, friend, or healthcare provider
• 100% of attendees rated the program as excellent to very good
Juneteenth 2024: Abyssinian Church, Harlem, NYC
June21st , 2025
CelebratingJuneteenthinBrooklyn,NewYork!
M-Power Community Workshop: Richmond, VA
Facebook Live
Education of Primary Care Providers
Our goal is to reduce DELAYS in diagnosis among African Americans by educating the primary care community with a focus on:
• Recognizing the signs and symptoms of myeloma
• Discriminating myeloma from other diagnoses such as diabetes
• Capturing an accurate diagnosis through proper use of testing
• Providing referral guidelines for Hematology and Oncology
• Grand Rounds
8,000
• Postcards mailed to 6,000+ PCPs in target cities
• Free PCP CME course “Don’t Miss Myeloma”
• Cobb Institute talk
• Talk at NMA Annual Meeting Dinner Meetings Articles and pending publications
Learners
Abstracts and Articles
Annual Meeting of the National Medical Association
• 12 1st – 3rd year medical students from all over the country met on August 5th in NYC at the NMA Annual Convention and Scientific Assembly
• Presented their posters, they worked on with a multiple myeloma experts immediately following the Jane Cooke Wright Symposium; which was dedicated to Dr. Edith Mitchell
Over 400,000 visits to M-Power site!
M-Power Website
Patient Interview On Local News
M-Power Connections
M-Power Website:
•Web Stats: Over 40k Page views across main, city sites & myeloma.org
•Google PPC targeted web traffic
Email Stats:
•Total Sent: 18 emails
•Total Audience: 38k*
•Open Rate Avg: 31%*
*Note: We have continued to refine lists, contributing to a more engaged audience as evidenced in the Open Rates (The industry standard high-mark is 21%).
M-Minute Promotion Stats:
•Total Sent: 19 emails
•Total Audience: 323k
•Open Rate Avg: 38.91%
M-Power Related Video Stats:
• Total Views: Over 50k
…And Growing!
2025 and Beyond
Engage
• 2025 Juneteenth Workshop, NYC
• M-Power Community Workshop in Miami and Philly
• Expand online and social media strategy
Educate
• Primary care program in Charlotte
• Lab based education
• Electronic Medical Record Initiative
Enhance
• Diversity in Clinical Trial Academy as part of the Diversity in Clinical Trials initiative
• Nurse equity decision tool
What Can I Do??
•Be more conscious of the topics of health equity
•Evaluate the opportunities in your experience to reduce disparities
•Support the M-Power movement!
BREAKOUT SESSION 2
PLEASE HEAD TO YOUR SELECTED BREAKOUT SESSION:
BREAKOUT A: PATIENTS ONLY – LESSONS LEARNED
Please remain in this room
BREAKOUT B: CARE PARTNERS ONLY
Please move to Aria B
Breakout Session: Patients Only –Lessons Learned
Michael Tuohy, 25-year Myeloma Patient, Support Group Leader
Controversies in Myeloma: Moderated by Dr. Joseph Mikhael
David Vesole, MD, PhD
John Theurer Cancer Center, Hackensack University Medical Center
MedStar Georgetown University Hospital
Dan Vogl, MD, MSCE
Abramson Cancer Center, University Of Pennsylvania, PA
Ask
– the – Experts w/ Guest Faculty
Closing Remarks & Evaluation
IMF Program Evaluations
Please return your program evaluations on your way out – whether you stay for the full program, or only one session, your feedback is invaluable to our team. Thank you for taking the time completing this.
Thank you to our sponsors!
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.
