APRIL 25, 2026
Welcome & Introductions
Robin Tuohy, 26-year Myeloma Care Partner
Vice President, Patient Support, International Myeloma Foundation Understanding Myeloma Basics
Daniel O'Leary, MD
University of Minnesota, Minneapolis, MN
(Video) Closing the Gap: Health Disparities in Myeloma
Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Medical Advisor, International Myeloma Foundation
Advancing Treatment Options Through Clinical Trials
David Dingli, MD, PhD
Mayo Clinic, Rochester, MN
Q&A with Panel
Coffee Break
Breakout: Frontline or Relapsed Treatment Approaches
-NDMM: Getting Started with Myeloma Management
Daniel O'Leary, MD
-RRMM: Continuing the Myeloma Treatment Journey
David Dingli, MD, PhD
LUNCH
Find Your Path: Navigating Your Myeloma Journey
IMF Nurse Leadership Board
Teresa Miceli, RN, BSN, OCN
Mayo Clinic, Rochester, MN
MINNEAPOLIS
AFTERNOON AGENDA
Living the Myeloma Life: Local Patient & Care Partner
Barb Davis, Patient Advocate
Fatih Kinoglu, Care Partner
The Unseen Impact of Myeloma: Taking Care of your Emotional Health
Jennifer Wieworka, DNP, RN, OCN
Director, Support Groups, International Myeloma Foundation
Q&A with Panel
Closing Remarks
Robin Tuohy, 26-year Myeloma Care Partner
Vice President, Support Groups, International Myeloma Foundation
Coffee/Network
• Slides for Today’s Program
• Evaluations PLEASE complete before you leave today
• SparkCures Search Engine specific for the Minneapolis region
• Ways to Give
The International Myeloma Foundation was founded in 1990, when a myeloma patient, care partner, and their specialist came together to fulfill an unmet need: a trusted resource for the global myeloma community, so no one would feel alone.
1942 - 2025
IMF President & CEO
“I
am humbled to serve alongside so many who are making a difference every day for patients and families affected by myeloma, and I look forward to building on the IMF’s legacy of impact”
The International Myeloma Foundation is the global leader in multiple myeloma
OUR MISSION:
To improve the quality of life of myeloma patients while working toward prevention & a cure
OUR VISION:
A world where every myeloma patient can live life to the fullest, unburdened by the disease
Together, we are turning hope into action:
one meeting, one conversation, one connection at a time.
Support Groups empower patients & care partners with information, insight & hope
The IMF provides educational support to a network of over 155 myeloma specific 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
Veterans SIG
Founded in 2025
For those who served our country
MM in the Middle
Founded in 2026
For those diagnosed before age 50
Smolder Bolder
Founded in 2023
For smoldering myeloma patients & care partners
Living with 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
Twin Cities, MN
Meets hybrid on the 2nd Saturday of each month at 10:00 AM
Central Time
Central MN
Meets in-person on the 2nd Saturday of each month at 10:00AM
Central Time
Rochester, MN
Meets virtual on the 3rd Saturday of each month at 10:00AM Central Time
Eau Claire, WI
Meets hybrid on the 2nd Monday of each month at 3:00 PM Central Time
Stronger Together: The IMF’s Commitment
The Myeloma Treatment Landscape
Guided Member Roundtable
Myeloma.org website walkthrough
ASH/ASCO Research Updates
Emotional Health: The Unseen Impact of Myeloma
Understanding Clinical Trials
Hope and Healing When the Future Is Uncertain
Palliative Care & Hospice
Emergency Planning
• Boca Raton, FL – March 13 – 14
• Cleveland, OH – May 1 – 2
• Los Angeles, CA – August 14 – 15
• Short Hills, NJ – October 2 – 3
Myeloma Community Workshops
• Kansas City, MO – March 28
• Virtual – April 20 – Newly Diagnosed
• Minneapolis, MN – April 25
• Detroit, MI – June 27
• Salt Lake City, UT – August 1
• Virtual – August 24 - Relapsed • Portland, OR – September 19
San Diego, CA – October 24 • Phoenix, AZ – November 14
Virtual – November 16
This year’s theme, #MoreThanMyeloma us that every patient is more than their diagnosis. And together, we will made the world take notice by lighting landmarks red across the globe.
Thank you for helping shine a light on multiple myeloma by engaging Minnesota landmarks to be lit in red in March. From bridges and buildings to monuments and city halls, every illuminated landmark sparks curiosity and inspires conversation! Thank you Capella tower, I-35W Bridge, and Mayo Clinic!
The IMF 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.
Each year, the International Myeloma Foundation brings myeloma patients and caregivers to Capitol Hill to meet with members of Congress. Together, we advocate for:
• Better access to treatment
• Stronger support for cancer research
• Policies that improve the lives of people living with myeloma
No policy experience is needed.
Just a willingness to share your experience.
IMF provides:
• Advocacy training
• Policy briefings
• Guidance every step of the way
Email us to join the IMF Advocacy Master Class and prepare for the next Hill Day.
Videos, Webinars, Podcasts, and
Understanding
Booklets
Tip Cards
Myeloma Minute
Weekly Updates
Myeloma Today
Quarterly News
S. Vincent Rajkumar, MD IMF Board Chair
Sagar Lonial, MD, FACP
Winship Cancer Institute, Emory University
Joseph Mikhael, MD, MEd, FRCPC, FACP IMF Chief Medical Officer
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
Philippe Moreau, MD University Hospital of Nantes
Sigurður Yngvi Kristinsson, MD, PhD University of Iceland
NIkhil Munshi, MD Dana-Farber Cancer Institute
Shaji Kumar, MD Mayo Clinic
Jesús San Miguel, MD, PhD University of Navarra
Saad Zafar Usmani, MD, MBA, FACP, FASCO
Memorial Sloan Kettering Cancer Center
Under the guidance of the IMF Scientific Advisory Board, the IMWG identifies critical research needs, collaborations, and funding
• Primary Goal: To improve patient outcomes by identifying the most promising research to prevent and treat myeloma and ultimately, find a cure!
355 Doctors
43 Countries
70 Publications
19th Annual ONS Symposium
4,400+ learners
25,000 MM patients impacted per month!
UNIVERSITY OF MINNESOTA, MINNEAPOLIS, MN
Daniel O'Leary, MD, Assistant Professor Division of Hematology, Oncology and Transplantation
University of Minnesota, Department
of Medicine
• Define multiple myeloma
• Review the spectrum of myeloma diseases
• Explain the various tests done for myeloma
• Discuss staging and what it means
• Review the broad outlines of treatment
• Cancer of plasma cells
• Plasma cells are white blood cells that make antibodies
• Antibodies are part of the immune system and help fight infections
• Each type of plasma cell makes a different antibody
• When multiple myeloma occurs a cancerous plasma cell “clones” itself over and over
• Eventually crowds out normal/healthy cells in the bone marrow
• Can cause damage to the bones and other organs, like the kidneys
• Monoclonal gammopathy of unknown significance
• Should not cause symptoms
• Does not require treatment but is monitored regularly
• 1% chance of progressing to multiple myeloma per year
• Smoldering myeloma
• Should not cause symptoms
• Sometimes not treated (higher risk disease may be treated), but is always monitored regularly
• Approximately 10% chance of progressing to multiple myeloma per year
• Risk varies based on certain markers and stability over time
• Multiple myeloma
• Causes symptoms if untreated
• Requires treatment
• Estimated New Cases in 2025: 36,110
• % of All New Cancer Cases: 1.8%
• In 2022, there were an estimated 192,144 people living with myeloma in the United States.
https://seer.cancer.gov/statfacts/html/mulmy.html
https://seer.cancer.gov/statfacts/html/mulmy.html
CRAB Criteria
• Bone marrow biopsy with at least 10% clonal plasma cells or a biopsy-proven myeloma tumor (called a plasmacytoma) AND one of:
• High Calcium
• Kidney (Renal) injury
• Low red blood cell counts (Anemia)
• Bone lesions
SLiM criteria
• Lab tests can also define multiple myeloma even if the above criteria are not met
• >60% plasma cells in the bone marrow (Sixty percent)
• Free Light chain ratio >100
• Imaging (MRI) with more than one lesion (hole) in the bones
• Myeloma comes from cancerous infection fighting cells
• Each person’s myeloma has a specific type
• IgG kappa, IgG lambda, IgA kappa etc…
• Understanding what normal infection fighting cells look like helps us understand what abnormal myeloma cells look like
● Immunoglobulins, which help fight infections, are made up of two heavy chains and two light chains
● Heavy chains are larger
● Light chains are linked to the heavy chain Example IgG
● The heavy chains that make up the backbone of the molecule are always paired as the same type (IgG, IgA, etc)
● The light chains can be either lambda or kappa, but will always be paired as the same type on each molecule
● Around 65% of myeloma patients have IgG myeloma, with either a kappa or lambda free light chain
● IgA is the second most common type of myeloma (around 20% of cases)
● IgD, IgE and IgM myeloma are all rare
● 20% of myeloma is free light chain only – so only shows kappa or lambda on testing with no heavy chain (IgG, IgA etc)
Bone disease
○ Bone destruction leading to skeletal-related events, such as fractures
Low red blood cell counts (anemia)
○ Bone marrow myeloma infiltration can result in reduced development of red blood cells
Kidney injury
○ Numerous mechanisms can impact different parts of the kidney
Peripheral neuropathy
○ Can result from the disease itself, but can also be caused by specific myeloma treatments
○ Frequent with multiple myeloma due to impairment of the immune system
- Free light chains are primarily cleared by the kidneys
- Excessive free light chains can build up in the kidneys and cause damage
- High calcium and NSAID use can also complicate kidney disease
- Bone disease is present in up to 80% of patients at diagnosis
- Myeloma activates the body’s normal bone destroying cells while turning off normal bone building cells
• Zoledronic acid or denosumab are medications that help strengthen the bones over time
• Recommended for initial treatment regardless of whether there is existing bone damage
• Zoledronic acid improved progression-free survival by about two months and reduced mortality by about 5.5 months in the Myeloma IX trial
• Helps prevent future bone damage; does not necessarily reverse existing injuries
• Complete blood count, comprehensive metabolic panel
• Looks for low blood counts (red blood cells, platelets, white blood cells) and organ injury (kidneys, bones, liver)
• Beta-2 macroglobulin and lactate dehydrogenase
• Part of staging/risk stratifying
• Serum protein electrophoresis
• Measures normal and clonal protein levels in the blood
• Serum immunofixation
• Describes the type of protein present
• Does not measure amount of protein
• Serum free light chain assay
• Measures normal and clonal protein levels in the blood
• Urine immunofixation and protein electrophoresis
• Similar to blood tests, looks for monoclonal protein amount/type in the urine
• Test done on the bone marrow sample
• Detects myeloma cells at a 1 in 100,000 or 1 in a million level (depending on the type of test)
• “Negative” tests means there is no detectable myeloma
• Does not mean the myeloma is gone forever, but is associated with longer remission time
• Multiple imaging options
• Positron Emission Tomography (PET/CT)
• Low-dose whole-body CT (LDWBCT)
• Whole-body MRI
• Bone survey
Tigges S, Lytic bone lesions due to multiple myeloma. Case study, Radiopaedia.org (Accessed on 19 Apr https://doi.org/10.53347/rID-195402
• Allows us to see the number of bone marrow plasma cells
• Congo red staining is usually done to look for AL amyloidosis
• Bone marrow samples also allow for multiple specialized tests
• Cytogenetics
• Fluorescence in situ hybrdiiation (FISH)
• Next generation sequencing (NGS)
• Staging incorporates multiple lab/genetic tests
• Myeloma staging is different from other cancer staging
• Used to help predict how soon myeloma will relapse after each line of treatment
• Initially treated with 3-4 drugs for several months
• People will often (but not always) go into remission with initial treatment
• First remission is then extended either with autologous (self) bone marrow transplant or additional consolidation chemotherapy
• Maintenance therapy is then continued until first relapse, drug intolerance
• If deep remission is maintained for years maintenance discontinuation can be discussed
JOSEPH MIKHAEL, MD, MED, FRCPC, FACP, FASCO
IMF MEDICAL ADVISOR
DAVID DINGLI, MD, PhD
They move the field forward by answering critical questions.
2 versus 3 versus 4
drugs
Time of transplant
Safety of therapy
Lead to drug approval
Triplets and quads, BsAb, CAR-T…….
Changes in practice
Importance of MRD, transplant etc
Experimental arm compared to standard of care
Way to get state of the art care or better
Active role in health management
Offers access to new treatment
A way to ‘give back’ to the field
Support and resources
Do all patients need 4 drugs for induction
Role of BCMA targeted therapies in induction or alternative to transplant or for maintenance
CAR-T versus stem cell transplant
BCMA and CD38 antibodies for relapsed disease
BCMA and GPRC5D bispecific antibodies for relapsed disease
Trispecific antibodies
Dual targeted CAR-T (BCMA and CD19)
GPRC5D CAR-T
CellMod use – newly diagnosed setting, maintenance or relapsed disease
Targeting specific disease subsets
Iberdomide, mezigdomide
t(4;14): KTX-1001
t(11;14): venetoclax, others
UNIVERSITY OF MINNESOTA, MINNEAPOLIS, MN
Daniel O'Leary, MD, Assistant Professor
Division of Hematology, Oncology and Transplantation
University
of
Minnesota,
Department of Medicine
Autologous transplant or collection of stem cells for delayed transplant at relapse
Maintenance Therapy until Relapse
Induction Therapy
Maintenance Therapy until Relapse
Multi-drug regimen for 4-6 cycles to induce remission
Proteasome Inhibitor
Crosslink DNA and cause cell death
Immonomodulatory Drugs (IMiD) Anti-CD38 antibody
-Build up of misfolded proteins promotes cell death
- Causes stress to mitochondria and changes cellular metabolism
-Decrease angiogenesis (blood vessel formation)
-Decrease interactions in tumor microenvironment
-Helps immune cells recognize myeloma
-Targets myeloma for immune destruction
-Alters calcium stores within cells
- Turns on pro-cell death genes
● Stem cells can be collected and used after induction or stored for relapse
● High dose chemotherapy (Melphalan) and stem cells infused 1-2 days later
● Used in both Transplant-eligible and Transplant-ineligible to prolong remission
● Lenalidomide (an IMiD) is the most common maintenance therapy
● May be combined with other drugs
David Dingli
MD, PhD, FRCP, FRCPE, FRCPSG, FACP, CBiol, FRSB, FRSM, FRCPath
Professor of Medicine, Division of Hematology and Director, Bone Marrow Transplant Program, Mayo Clinic, Rochester, MN 55905
Not every relapse needs immediate therapy
Bone pain
Fatigue
Thirst/frequent
urination/constipation/gritty eyes
Foamy urine
Nausea/vomiting/itching/hiccups
Limb weakness
Sphincter control issues
Blurred vision/bleeding from the nose
Functional state
Fit versus not fit
‘Performance status’ Comorbidities
Healthy vs other disease states (severity)
Type of relapse
Indolent (biochemical) versus symptomatic presence or absence of extramedullary disease
Clonal evolution
Relapse on or off therapy
Timing of relapse
Within 12 – 18 months after transplant or later
Social circumstances
Social support present
Logistics (close or far from medical care)
Relapse is not the same as newly diagnosed disease in many ways
What is the person refractory to?
• Lenalidomide
• Proteasome inhibitor (Bortezomib or Carfilzomib)
• CD38 antibody (Daratumumab or Isatuximab)
Relapse on or off therapy
• Not common to relapse off therapy at present but may be more common in the future
Exposed versus refractory to therapy
• Daratumumab or Isatuximab CD38 antibodies
IMiDs
• Pomalidomide
• Carfilzomib Proteasome inhibitors
BCMA targeted agents
• CAR-T (Cilta-cel or Ide-cel)
• Bispecific antibodies (Teclistamab, Elranatamab, Linvoseltamab)
• Antibody drug conjugate (Belantamab)
Stem cell transplant
• Delayed first transplant or second transplant
Clinical trial
Lin Y et. al ASCO 2023, Munshi NC et. al NEJM 2021
Manufacturing required
Toxicities
Bridging therapy often needed
Time away from home
Cytokine release syndrome
TImmune effector cell neurologic toxicity syndrome
• Early
• Late
Immune suppression
Prolonged cytopenias
Second malignancies
Immune effector cell enteropathy
Low disease burden is better
Higher ‘quality’ of cells collected
Better CAR-T efficacy
? More time ‘without’ therapy
Less toxicity
High risk disease
• Tumor evolution
• EMD
• Short response to initial therapy
• Symptomatic relapse
Relapse on dual therapy
Advantage of early CAR-T
• More options for bridging therapy (some may not need it)
• ‘More time’ off therapy
• Lower disease burden
Avoid BCMA targeting agents (e.g. bispecific antibodies or belantamab)
Avoid talquetamab before T cell collection
Avoid cyclophosphamide or bendamustine
Less problematic with earlier use of CAR-T
Avoid BCMA targeting agents for ‘bridging therapy’
Dual targeting
• BCMA and CD3
• GPRC5D and CD3
Off the shelf
High response rates (60 – 70%)
Simpler logistics
Step up dosing
‘Continuous therapy’
Immunosuppression
Cytokine release syndrome
Neurotoxicity
Immunosuppression
Cytopenias
Dysgeusia
Skin/nail changes
Weight loss
• Powerful combination
• Recently approved (MajesTEC-3)
• Durable responses
• Therapy gets ‘simpler’
• Risk of infections
• Open ended
‘Once and done’ versus ‘continuous’
Daratumumab exposed versus daratumumab refractory
Logistics
Manufacturing versus over the shelf
Infection risks
Other toxicities
• The longer the better!
• > 6 months, ideally > 9 months
Infection prophylaxis
• Acyclovir/valacylovir
• Bactrim or equivalent
Immunizations
• Age appropriate
IVIG or sIg
Monitoring
• Cytopenias
• CMV reactivation
• CD4 counts
Prompt evaluation for infection
Transfusion risks
• Quadruplets with ASCT
• How long is the PFS?
• BCMA second line
• BCMA first line
• Curing SMM/HR MGUS?
• Proper risk stratification critical
• Can we safely stop therapy?
Important to always plan ahead
In vitro drug testing
High-risk disease needs more planning
Balancing act
• Safety
• Efficacy
• Convenience
• Cost Always consider clinical trials
NGS testing BCMA expression
Revisit ‘old’ regimens
Venetoclax for t(11;14)
Earlier use of BCMA directed therapies
In vivo manufacturing
Dual targeted CAR-T
CellMods
Trispecific antibodies
More personalized therapies
Iberdomide
Mezigdomide
NGS driven
• Slides for Today’s Program
• Evaluations PLEASE complete before you leave today
• SparkCures Search Engine specific for the Minneapolis region
• Ways to Give
• Slides for Today’s Program
• Evaluations PLEASE complete before you leave today
• SparkCures Search Engine specific for the Minneapolis region
• Ways to Give
Myeloma’ s
Terrain
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).
Myeloma’
Terrain
Bone marrow
Anxiety
Stress Depression
Decreased red blood cells
Decreased white blood cells
Myeloma protein in blood and urine
Changes in bone remodeling
Clonal myeloma plasma cells can cause many issues
• Crowd out normal bone marrow cells
• Can cause kidney dysfunction
• Affect bone cells (balance of osteoclasts & osteoblasts)
Anemia & Fatigue
Immune Dysfunction & Infection
Renal Dysfunction
Bone Damage
Myeloma’ s Terrain
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:
Flu, COVID, RSV & and pneumococcal vaccinations; avoid live vaccines
IMWG = International Myeloma Working Group; HCP = healthcare provider. Raje NS, et al. Lancet Haematol.2022;9(2):143–161. IMF Nurse Leadership Board ONS Symposia 2024.
Preventative and/or supportive medications
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
• 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
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
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.
The relapsing nature of multiple myeloma means patients and their care partners may have multiple points to make decisions about treatment & care
People with myeloma are living longer; goals, preferences, and values may change over time
“The aim of shared decisionmaking is to ensure that:
- Patients understand their options and the pros and cons of those options.
- Patient's goals and treatment preferences are used to guide decisions.”
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 are 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
Starting Your Trek
Understand options; consider priorities
• Use reliable sources of information like the IMF and “Myelo”
• Use caution when considering stories of personal experiences
• Consider your goals, values and preferences
Express your goals/values/preferences; create a dialog
Arrive at a treatment decision together
• My top priority is [goal/value]; additional [preferences] are also important.
• I think [treatment] may be a good choice given my priorities… What do you think?
• What treatment would you recommend given my goals and priorities?
• Be empowered to be part of decision-making
• Stay informed, understand options
• Use reliable and current sources of information
• Use caution considering stories of personal experiences
• Consider your priorities
• Discuss with your care partner
• Consider your goals/values/preferences
• Be a part of the conversation, create a dialog
• Ask questions & Express your goals/values/preferences
• Ask for time to consider options, if needed
• Arrive at a treatment decision together
• Arrange follow up to review and adjust, if needed
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 = 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).
DARZALEX FASPRO® as monotherapy is indicated for the treatment of adult patients with high-risk smoldering multiple myeloma
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 Maintenance
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.
Your Trek
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)
Immunomodulatory Drug (IMiD)
• Revlimid (lenalidomide)
• Kyprolis (carfilzomib) Steroids
• Pomalyst (pomalidomide)
At infusion clinic: subcutaneous injection, on body device or infusion
Supportive medication:
• Decadron (dexamethasone)
• Prednisone
Oral medication taken at home
• 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 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
• 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
• 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 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
HCPs may manage DVT/PE risk by
• Adjusting medications and schedules
Blood clots can cause swelling, pain, discoloration (DVT), shortness of breath, chest pain, sense of doom (PE). Blood clots are serious and can be life threatening.
• 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)
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
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
Stem cell transplant after induction remains the standard of care for eligible patients
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
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
Myeloma Therapy
Belantamab mafodotina BVd, BPd, BKRd
Bortezomib (SQ admin)
Carfilzomib
Car T-cell
Daratumumab
Elotuzumab
Common Combinations or Therapy Names
VRd, Vd, VCd
KRd, Kd, Dara-Kd, Isa-Kd
Cilta-Cel®, Ide-Cel®
Dara-Rd, Dara-Vd, Dara-Pd, Dara-VMp, Dara-Kd, Dara-Tecvayli®
ERd, EPda
Isatuximab Isa-Pda, Isa-Kd
Ixazomib IRd
Lenalidomide
VRd, Rd, KRd, Dara-Rd, ERd, IRd
Pomalidomidea Pda, Dara-Pd, EPda, PCdc
Selinexor
Xd, XVd, XKdc, Dara-Xdc
T cell Engager (Bispecific)b Elrexfio®, Lynozyfic™, Talvey®, Tecvayli
New agents or regimens in clinical trials may be an option
Many therapy options are in the myeloma toolkit and more are being studied
a2 or more prior therapies. b4 or more prior therapies. cOff-label; not currently FDA-approved.
C = cyclophosphamide; d = dexamethasone; Dara = daratumumab; FDA = US Food and Drug Administration; E = elotuzumab; Isa = isatuximab; I = ixazomib; K = carfilzomib; M = melphalan; p = prednisone; P = pomalidomide;
R = lenalidomide; SQ = subcutaneous; V = bortezomib; X = selinexor.
NCCN Guidelines®. Multiple Myeloma V4.2026. Accessed December 22, 2025.
Relapsed MM with 1-2 prior LOT
BCMA target: potential for infection
• Abecma® (ide-cel)
• Carvykti® (cilta-cel)
• (anito-cel – pending FDA approval)
Bridging therapy, if needed; Lymphodepleting therapy when CAR T cells are ready T Cell Infusion Close monitoring and Management of side effects 1 3 4 5 HOME! Apheresis to Collect T Cells T Cell Manufacturing 2a 2b
Relapsed MM after 4 prior LOT (or clinical trials)
TCE are innovative immunotherapies used in the treatment of relapsed multiple myeloma. These therapies work by redirecting the patient's own T-cells to recognize and attack myeloma cells.
Bispecific antibodies
• About 7 in 10 patients respond
• Off-the-shelf treatment; no waiting for engineering cells
BCMA target: potential for infection
• Tecvayli® (teclistamab)
• Elrexfio® (elranatamab)
• Lynozyfic™ (linvoseltamab)
Cytotoxic cytokines
Bispecific antibody T cell MM cell
GPRC5D target: potential for skin and nail side effects, GI issues of taste change, anorexia and weight loss
• Talvey® (talquetamab)
FcRH5 target: new myeloma target
• (cevostamab - pending FDA approval)
Target CD3
BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; GPRC5D = G protein–coupled receptor, class C, group 5, member D; CAR = Chimeric Antigen Receptor; LOT = Lines of Therapy; MM = multiple myeloma.
Shah N, et al. Leukemia. 2020;34(4):985-1005.
RELEASE SYNDROME (CRS) ICANS AND NEUROTOXICITY
• Fever
• Fatigue & Weakness
• Headache
• Nausea/Vomiting/Diarrhea
• Chills
• Low blood pressure
• Rapid heart rate
• Difficulty breathing
CRS is a common but typically mild & manageable side effect
PREVENTION AND MANAGEMENT of CRS
• Disease management to reduce tumor burden
• Bispecific Step-up Dosing (SUD)
• Tocilizumab
• Steroids
• Anti-Seizure medications
• Close monitoring
• Headache
• Difficulty concentrating
• Lethargy
• Agitation
• Hallucinations
• Tremors
• Confusion
• Memory loss
• Aphasia (difficulty with speech, reading, writing, or understanding language)
• Personality change
• Delayed Neurotoxicity can include Parkinsonism, Cranial Nerve Palsies and Peripheral Neuropathy/Guillan Barré syndrome (GBS)
CAR = chimeric antigen receptor. ICANS = Immune Effector Cell-Associated Neurotoxicity Syndrome
Brudno JN, Kochenderfer JN. Blood. 2016;127(26):3321-3330. Lee DW, et al. Biol Blood Marrow Transplant. 2019;25:625-638. Kumar, et al. Blood (2024)
(Supplement 1): 4758.
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
IgG < 400 mg/dL (general infection risk)
ANC < 1000 cells/μL (general infection risk)
Consider prophylaxis with levofloxacin
Consider prophylaxis with trimethoprim-sulfamethoxazole (Bactrim)
Consider prophylaxis with fluconazole
Antiviral therapy if exposed or positive for covid per institution recommendations
IVIg recommended for patients receiving CAR T or TCE therapies
Consider G-CSF 2 or 3 times/wk (or as frequently as needed) to maintain ANC > 1000 cells/μL and maintain treatment dose intensity
Some people receiving BCMA-targeting therapies have experienced infections that are less common like CMV, PJP and fungal infections
ANC = absolute neutrophil count; BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; CMV, cytomegalovirus; GCSF = granulocyte colony-stimulating factor; HSV = herpes simplex virus; IVIg = intravenous immunoglobulin; PJP = Pneumocystis jirovecii pneumonia; VZV = varicella zoster virus. Raje NS, et al. Lancet Haematol.2022;9(2):143–161.
Changing Course
Xerostomia
OTC dry mouth rinse, gel, spray are recommended. Avoid hot beverages. Anti-fungal therapy for oral thrush.
Dysgeusi a Dexamethasone oral solutions “swish and spit” may provide benefit. Sour citrus or candies before meals are also recommended.
Dysphagia
= Dry Mouth = Difficulty Swallowing = Taste Change
Dietary modifications with small bites, eating upright, and sips with food can help manage symptoms
Weight Monitoring
Some medications lead to weight gain, others to weight loss. Meet with a nutritionist
Consider diet changes, supplements
Care
Attention to oral hygiene. Regular dental cleaning and evaluation. Close monitoring for ONJ, oral cancer and dental caries
ONJ = Osteonecrosis of the Jaw; OTC = Over The Counter
Work closely with your entire health care team to manage oral 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
Anti-histamines, as needed
Nail Changes
Keep your nails short and clean.
Watch for “catching and tearing”
Apply a heavy moisturizer like Vaseline or salve. Wear cotton hand coverings to bed
A nail hardener may help with thinning
Tell the team if you have signs of a fungal infection, like thickened or discolored nails
Symptoms are under-reported:
“I mentioned it before. Nothing can be done.”
“I don’t want to be put on another medication.”
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
• Mental health / social engagement
• Stress reduction; relaxation
• Sufficient Sleep
• Maintain a healthy weight; eat nutritiously
• Activity / exercise / prevent falls, injury
• Stop smoking
• Sexual health / intimacy
• Complementary or alternative therapy
• Socializing, Staying connected
Have a PCP for general check ups, preventative care, health screenings, vaccinations
Have specialists for dental care, eye exams/screening, skin cancer screening
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.
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
Caring for the care partner
• Recognize that caregiving is difficult and stressful
• Encourage care partners to maintain their health, interests, and friendships
• The IMF has information and resources to help care partners
Care partners can be a spouse, close relative, a network of people (family, friends, neighbors, church members, etc) IMF Tip Cards
“THANK YOU!”
JENNIFER WIEWORKA, DNP, RN, OCN
IMF DIRECTOR, SUPPORT GROUPS
The International Myeloma Foundation Support Group Team presents this information to support learning and conversations with your healthcare team.
This presentation is for informational purposes only and is not intended to provide medical advice or replace guidance from your medical providers.
Common Emotional Responses
The Spectrum of Emotions
Coping with your Emotions
Grounding Exercises
When & Where to Seek Help
Wellness Tips & Resources for Support
Questions & Discussion
Myeloma is often seen through the lens of physical symptoms, treatments, and survival rates.
Beneath the surface of this medical battle lies a profound emotional journey that affects not only the person diagnosed but also their loved ones.
Getting a diagnosis of cancer can feel like getting the wind knocked out of you.
https://opentextbc.ca/introductiontopsychology/chapter/10-1-the-experience-of-emotion/
Some patients describe a feeling of numbness or surrealism after a cancer diagnosis; unable to fully grasp the weight of the news.
• Confusion
• Disconnection
• Denial
It is completely normal to experience anger towards:
• Doctors
• Healthcare team
• Yourself
• God
Patients describe many fears after a myeloma diagnosis, including:
• Fear of death and dying
• Fear of pain or treatment
• Fear of rejection/loneliness
• Fear about the future
• Practical worries (finances, housing, career, etc.)
• Side effects like fatigue, hair loss, nausea, and cognitive changes can strip away one’s sense of normalcy and identity.
• Some people feel isolated as they withdraw from social activities, work, or relationships due to physical limitations or emotional distress.
• The loss of independence and routine can be demoralizing and defeating.
• Cancer can significantly impact relationships with partners, family, friends, and coworkers.
• Some people may not know how to respond or offer support, leading to awkwardness, discomfort, or distance.
• Care partners can also experience emotional exhaustion, guilt, and helplessness as they witness their loved one's suffering.
Symptoms of anxiety include:
• ruminating about a specific fear
• sleep disturbance
• feeling restless or edgy
• irritability
• being easily fatigued or overstimulated
• difficulty concentrating or forgetfulness
Symptoms of depression include:
Sleep disturbance Loss of interest/pleasure in activities that used to feel exciting (anhedonia)
• Feelings of guilt or worthlessness
• Changes in energy or excessive fatigue
• Appetite/weight changes
• Psychomotor disturbance
• Suicidal thoughts
• Depressed mood
• In the US, 23.1% of the general population meet criteria for a diagnosis of a mental health disorder.
• Over 56% of patients living with blood cancers experience anxiety and depression
• This is never about suggesting the illness itself is “good” or that someone should suffer.
• Rather, it’s about recognizing that within extremely difficult or unwanted experiences, people sometimes discover forms of meaning, strength, connection, or clarity.
Research in psycho-oncology shows that post-traumatic growth is surprisingly common. People sometimes describe:
• A greater appreciation for life’s small moments
• New or deepened spiritual beliefs
• A sense of inner strength they didn’t know they had
• Increased empathy or patience
Suffering forces confrontation with vulnerability and uncertainty, and some individuals emerge with a transformed worldview.
• We may not yet have a cure for myeloma, and the reality is our physical bodies are never perfect, but we can experience emotional or spiritual healing in the midst of this journey.
• Consider for yourself what it would mean to engage in “healing.”
Cancer strips away control, but in that loss, people often find a different kind of agency:
• Choosing how to spend meaningful time
• Choosing how to speak about their experience
• Choosing how they meet uncertainty emotionally and spiritually
The struggle becomes a teacher of resilience and presence.
A powerful source of meaning comes from turning personal suffering into support for others:
• Advocating
• Volunteering
• Leading a support group
• Sharing one’s story
• Helping someone newly diagnosed
The idea of “I can use what I’ve been through” gives suffering a sense
of direction.
• Awareness
• Identify
• Accept
• Recognize
• Stay Curious
• Let go
Don’t feel that you have to be “strong.”
If you feel tired, lonely, anxious, depressed, angry, etc., acknowledge your feelings and talk about them. If all you want to do is cry, then go ahead.
“The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.
How much sorrow can I hold? That’s how much gratitude I can give. If I carry only grief, I’ll bend toward cynicism and despair. If I have only gratitude, I’ll become saccharine and won’t develop much compassion for other people’s suffering.
Grief keeps the heart fluid and soft, which helps make compassion possible.”
-Francis Ward Weller
5-4-3-2-1 Grounding Exercise
The “Pretzel” or other bilateral stimulation exercises
Mindful Walking
4 Square breathing
Categories (i.e. Colors, college football teams, etc.)
Aromatherapy
Hold a piece of ice
Eat a small bite of food with intention and mindfulness
Think about what you need. Lots of people will want to help but don’t know how.
• Practical needs
• Financial help
• Emotional support
Your mental health is as important as your physical health!
Tell your healthcare team or another medical professional if you need support.
Ask if your hematology/oncology clinic employs a clinical social worker or counselor. Emotional support and therapy services are available at many clinics.
• Included
• Welcomed
• Connected
• Accepted
• Involved
• Supported
• Heard
• Valued
• Seen
• Hopeful
Talk to friends and family, and others you trust
Ask for help and be specific about what you need Join a support group
Get education and information only from reliable/reputable sources
Take time for yourself
Spend time with supportive friends
Celebrate every victory!
Talk with your doctor to determine what plan of action works best for you. Medications could potentially be part of a treatment plan that you and your doctor work on together.
If you think therapy/counseling could be beneficial, ask for a referral or check out websites/platforms such as:
• Headway
• Better Help
• Talkspace
• CaringBridge
• Psychology Today
• Slides for Today’s Program
• Evaluations PLEASE complete before you leave today
• SparkCures Search Engine specific for the Minneapolis region
• Ways to Give
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.
• Slides for Today’s Program
• Evaluations PLEASE complete before you leave today
• SparkCures Search Engine specific for the Minneapolis region
• Ways to Give