WELCOME TO THE SALT LAKE CITY
IMF MYELOMA COMMUNITY WORKSHOP
SATURDAY, AUGUST 1, 2026
MORNING AGENDA
9:00 – 9:15AM Welcome & Announcements
9:15 – 9:45AM Understanding Myeloma Basics
9:45 – 10:00AM (Video) Closing the Gap: Health Disparities in Myeloma
10:00 – 10:15AM Advancing Treatment Options Through Clinical Trials
10:15 – 10:45AM Q&A with Panel
10:45 – 11:00AM Coffee Break
11:00 – 12:00PM Breakout: Frontline or Relapsed Treatment Approaches
-NDMM: Getting Started with Myeloma Management -RRMM: Continuing the Myeloma Treatment Journey
12:00 - 12:40PM LUNCH
AFTERNOON AGENDA
12:40 – 1:25PM Myeloma: Putting the Pieces of the Puzzle Together
1:25 – 1:55PM Living the Myeloma Life: Local Patient, Care Partner, & Family
1:55 – 2:20PM The Unseen Impact of Myeloma: Taking Care of your Emotional Health
2:20 – 3:05PM Q&A with Panel
3:05 – 3:15 PM Closing Remarks
3:15 – 3:30PM Coffee/Network
SCAN THIS QR CODE FOR KEY IMF RESOURCES
Helpful Links to:
• Slides from today’s programming
• Evaluations for this program
• SparkCures Search Engine specific for the Salt Lake City region
• Ways to Give
OUR MISSION
Accelerating the prevention and cure of myeloma and improving the quality of life for patients and families
SHARED EXPERIENCES BECOME SHARED STRENGTH!
Support Groups empower patients & care partners with information, insight & hope
The IMF provides educational support to a network of over 155 myeloma specific groups and over 200 Group Visits/Year
MEET THE SUPPORT GROUP TEAM!
Robin Tuohy Vice President, Patient Support
• 25+ Year Care
Partner
• Advocate
Jenn Wieworka Director, Support Groups
• Doctorate-Prepared Nurse
• Clinical Nurse Specialist
Becky Bosley Senior Director, Support Groups
• Oncology Nurse
• Breast & Ovarian
Cancer Survivor
Yara William Associate Director, Support Groups
• Doctor of Public Health
• Community Engager
Katie Atkins Associate Director, Support Groups
• Oncology Social Worker
• Resource Navigator
Cecilia Romero Project & Technology Manager, Support Groups
• Public Health Advocate
• Technology Educator
LOCAL SUPPORT GROUP
Mountain West
SHARED EXPERIENCE GROUPS
MM Families
For patients & care partners with young children
Living Solo & Strong
For patients without a care partner
Veterans SIG
For those who served our country
MM in the Middle
For those diagnosed before age 50
Las Voces de Mieloma
For Spanish Speaker patients & care partners
Care Partners Only
For myeloma care partners only
Smolder Bolder
For smoldering myeloma patients & care partners
Living
with
High-Risk Multiple Myeloma
For high-risk myeloma patients & care partners
EDUCATION – WRITTEN
2026 PATIENT EDUCATION - US
Patient & Family Seminars
• 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
YOU ARE NOT ALONE
UNDERSTANDING MYELOMA BASICS
JORGE MONGE, MD
ASSISTANT PROFESSOR OF MEDICINE - HEMATOLOGY
DIRECTOR OF ASCT AND MYELOMA CELLULAR THERAPIES
UNIV. OF COLORADO CANCER CENTER, UNIV. OF COLORADO ANSCHUTZ
Understanding Myeloma Basics
JORGE MONGE, M.D.
Assistant Professor of Medicine
Director, ASCT and Myeloma Cell Therapies
University of Colorado Anschutz
How Healthy Plasma Cells Work
Your body's antibody factories
How Myeloma Starts
One cell goes wrong — and copies itself
One clone → one abnormal protein, an M-protein
MGUS
→ Smoldering → Active Myeloma
SMOLDERING
Common finding
M-protein <3g/dL and Bone marrow plasma cells <10%
No Myeloma-defining Events
Common finding
M-protein ≥3g/dL or Bone marrow plasma cells 10-59% No Myeloma-defining Events
Bone marrow plasma cells ≥10% and Myeloma-defining Event
Active Surveillance, Explained
Why your doctor may watch, not treat
CRAB and SLiM = Myeloma-Defining Events
C - Calcium
Elevated Blood
Calcium: Broken down bone tissue releases calcium into the bloodstream, causing thirst, nausea, constipation, confusion.
R - Renal
Kidney Damage: Excess light chains can damage the kidney, revealed by rising blood creatinine levels. Kidney failure can cause nausea, tiredness, swelling.
A - Anemia
Low Red Blood Cells: Crowded marrow makes fewer red cells, leading to unexpected fatigue, weakness, or shortness of breath.
B - Bone
S - Sixty
Sixty % or more
Plasma Cells: A high number of plasma cells on bone marrow biopsy.
Li – Light Chain Ratio
Involved Free Light
Chain Ratio ≥100: A very high free light chain ratio.
Lytic Lesions: Weakening bone areas (Swiss-cheese holes) detected on X-rays, CT, or PET/CT scans that lead to bone fractures and pain.
M - MRI
More than 1 Bone
Marrow Lesion: Whole body MRIs can detect subtle changes in the bone marrow, even when CT or PET/CT scans were normal.
Measuring the Abnormal Protein
Serum or Urine Protein Electrophoresis and Immunofixation (M-Protein)
Measuring the Abnormal Protein
Serum Free Light Chains
Measuring the Abnormal Protein
Mass Spectrometry
What Staging Means
A planning strategy, not a prognosis or life-expectancy
RISS Blood Tests
I Low Beta-2 Microglobulin Normal Albumin Normal Standard Risk
II Intermediate values (Neither Stage I nor III)
III High Beta-2 Microglobulin Elevated High-Risk
New High-Risk Definition
Again, useful to plan treatment
What It Means For Your Plan
Different myelomas, different strategies
Bones
Protecting against fractures
Bone Strengthening Drugs: Medications like Zoledronic Acid (Zometa) or Denosumab (Xgeva) protect bones from breakdown.
Fracture Reduction: Regular bone-targeted therapy significantly lowers the risk of bone pain or fractures.
Dental Health Focus: A dental check-up before starting bone strengthening drugs to avoid jaw-bone infections (ONJ).
New focal pain? Tell your team.
Infections
Roughly 7x the risk — prevention matters
Preventative Medications
Simple daily antiviral pills (like acyclovir) protect against shingles when taking targeted myeloma drugs like bortezomib or daratumumab. Depending on your treatment, you may need more, including an infusion of antibodies (IVIG).
Timely Vaccinations
Staying up to date with non-live vaccines (Flu, COVID-19, Pneumococcal) keeps your immune defenses ready throughout your treatment journey.
Early Fever Calls
Always report a fever right away. Early antibiotic treatment keeps minor infections from turning into major complications.
Neuropathy
Report numbness or tingling early
Signs to Notice Early
Peripheral neuropathy feels like tingling, numbness, or a "pins and needles" sensation in your toes or fingers. It is often linked to certain myeloma medications.
Quick Adjustments Help
Telling your team early allows us to tweak drug dose/schedule or even switch treatments, protecting your nerves before lasting changes occur.
Blood Clots
Know the warning signs = sudden chest pain, shortness of breath, leg swelling/pain
Why Risk Increases
Both myeloma itself and immunomodulatory medications (thalidomide, lenalidomide or pomalidomide) can temporarily increase blood clot risk.
Simple Daily Protection
Your doctor will prescribe a daily protective medicine —ranging from simple low-dose aspirin to blood thinners—tailored to your personal risk factors.
Whole-Person Wellbeing
Part of the plan, not an afterthought
Treatment focuses on your whole life, not lab numbers.
Exercise along with physical therapy if needed.
Good nutrition.
Caregivers are essential partners.
Open communication with your team.
Emotional support.
What matters to you belongs in the plan.
Tracking Myeloma With Blood Tests
One value is a snapshot – the trend is the story.
What “Remission” Really Means
Deeper Responses Usually Mean Longer Remissions
No myeloma cells
in 100,0001,000,000 cells
Minimal Residual Disease (MRD) Negativity
"Remission" means myeloma cells have dropped to very low levels. Modern tests like Next-Generation Flow and NextGeneration Sequencing can scan thousands to millions of bone marrow cells.
Why Free Light Chains Move Faster
An early hint of response
Intact Immunoglobulin (IgG, IgA, M-protein)
Half-Life: Weeks
Full antibody proteins clear from blood slowly. It takes several weeks to see significant drops on your SPEP lab report.
Free Light Chains (FLC)
Half-Life: Hours
Small light chain fragments clear very quickly.
Thank You!
CLOSING THE GAP: HEALTH DISPARITIES IN MYELOMA
JOSEPH MIKHAEL, MD, MED, FRCPC, FACP, FASCO
IMF MEDICAL ADVISOR
ADVANCING TREATMENT OPTIONS THROUGH CLINICAL TRIALS
DOUGLAS SBOROV, MD, MS
UNIVERSITY OF UTAH HUNTSMAN CANCER INSTITUTE
SALT LAKE CITY, UT
OBJECTIVES
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!
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
• The patient is randomly assigned to a treatment—a process called “randomization”
• 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
ANIMAL STUDIES: Examine safety and potential for efficacy
PHASES
1
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
2
EVALUATION OF EFFECTIVENESS IN A CERTAIN TUMOR TYPE
• Determine short-term AEs and risks; closely monitored
• Includes up to 100 patients, typically
GATHER ADDITIONAL EFFECTIVENESS AND SAFETY
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
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.
DIVERSITY IN CLINICAL TRIALS PROGRAM
Objective: To promote trust and educate patients regarding clinical trials, particularly those from populations underserved by clinical trials, laying the groundwork for potential future trial participation
IMPORTANCE OF CLINICAL TRIAL PARTICIPATION BY DIVERSE POPULATIONS
People from racial and ethnic minorities and other diverse groups are underrepresented in clinical research. This is a concern because people of different ages, races, and ethnicities may react differently to certain medical products. – FDA
Leadership and commitment Investigator hiring, training, and mentoring practices Community engagement practices Patient engagement practices
FDA = US Food and Drug Administration. Regnante JM, et al. J Oncol Pract. 2019;15(4):e289-e299. FDA website. Clinical Trial Diversity. Accessed March 27, 2024. https://www.fda.gov/consumers/minority-health-and-health-equity/clinical-trial-diversity.
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
CLINICAL TRIALS: MYTHS
MYTH: If I participate in a clinical trial, I might get a placebo, not active treatment
MYTH: If I participate in a clinical trial, I can’t change my mind
• Phase 1 and 2, everyone gets active treatment
• Phase 3 standard of care vs new regimen: often standard regimen with/without additional agent in MM trials
• Patients can withdraw their consent for clinical trial participation at any time
MYTH: Clinical trials are dangerous because they have new medicines and practices
• Some risk is involved with every treatment, but medicines are used in clinical trials with people only after they have gone through testing to indicate that the drug is likely to be safe and effective for human use
MYTH: Clinical trials are expensive and not covered by insurance
• Research costs are typically covered by the sponsoring company
• Standard patient care costs are typically covered by insurance
• Check with clinical trial team/insurers; costs such as transportation, hotel, etc may not be reimbursed and are paid by patient
PhRMA website. Accessed March 25, 2024. https://phrma.org/-/media/Project/PhRMA/PhRMA-Org/PhRMA-Org/PDF/A-C/CLINICAL-TRIALS-MYTH-FACT-PRINT.pdf?hsCtaTracking=f6689b95-1626-40d9-8c87-c6b 8d31600a4%7C35221aa8-d487-4db3-9416-b9c3c35e3bac
.
CONCLUSIONS
• Clinical Trials are a critical part of myeloma therapy
• Every myeloma patient should at least consider participation in a trial when relevant
• The IMF is deeply committed to improving access to clinical trials, especially in those who have been historically underrepresented
• The IMF will continue to expand its work in clinical trials – STAY TUNED!
Q&A WITH GUEST PANEL
RELAPSED & REFRACTORY MULTIPLE MYELOMA:
CONTINUING THE MYELOMA TREATMENT JOURNEY
DOUGLAS SBOROV, MD, MS
UNIVERSITY OF UTAH HUNTSMAN CANCER INSTITUTE
SALT LAKE CITY, UT
OBJECTIVES
1. Discuss WHY relapses occur
2. Review important principles of selecting treatment for relapsed myeloma
3. Empower patents to engage in the decision-making process
4. Encourage patients to know there are MANY options for relapsed myeloma
MYELOMA ALMOST ALWAYS RELAPSES
SYMPTOMATIC REFRACTORY RELAPSE
Adapted from Dr. Brian Durie and Keats JJ, et al. Blood. 2012;120:1067-1076.
WHY DOES MYELOMA RELAPSE?
We speculate many reasons for this...
1. It is never fully cleared
Minimal Residual Disease (MRD) negativity is not truly NEGATIVE
2. The immune system cannot contain or prevent the disease Remember myeloma is a disease of the plasma cell
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
Teclistamab, Talquetamab, Elranatamab, Linvoseltamab
Teclistamab and Daratumumab
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
1. Change current mechanism of action
Key – when myeloma relapses, it “overcomes” the current therapy being used, so it is necessary to change the approach
to the disease with a new a mechanism of action
Drug Class Overview
(thalidomide)
(lenalidomide)
(pomalidomide)
(daratumumab) Sarclisa (isatuximab)
(elotuzumab)
Drug Class Overview
Peptide Drug Conjugate* Pepaxto (Melphalan Flufenamide) Melflufen
BCMA Targeted Antibody Drug Conjugate (ADC)
Blenrep (belantamab mafodotinblmf) Bela, Belamaf, or B
Abecma (idecabtagene vicleucel) Ide-cel
CAR T Cell therapy
Bispecific Antibodies
Pipeline
Carvykti (ciltacabtagene vicleucel) Cilta-cel
Tecvayli (teclistimab)
Talvey (Talquetamab)
Elrexfio (Elranatamab)
Lynozyfic (Linvoseltamab
Tec Talq Elra Linvo
Cevostamab, Iberdomide, Mezigdomide, Anito-cel, Venetoclax
AZD0120, Etentamig, KLN-1010, Trispecifics …………………………… MORE TO COME!
* This agents is currently off the market in the US but available through special programs
SC or SQ = Subcutaneous, Under the skin; IV = Intravenous
2. Don’t Save the Best for Last!
Typically the most durable remissions occur earlier in the disease course
So, we want to use the best possible therapies before the disease becomes more resistant
Therapies tend to have a greater effect earlier in the disease course...
3. Typically use CAR-T Cell Therapy, Bispecific Antibodies or Triplets
As will be discussed today, options for relapsed myeloma have grown and these three approaches have the best outcomes
This has to be balanced with patient characteristics and preferences – so other options (like doublets) can be considered NEW – the combination of Teclistamab and Daratumumab was
4-6. Consider Patient, Disease and Treatment
Factors
• Renal insufficiency
• Hepatic impairment
• Comorbidities
• Preferences
• Social factors
– Support system
– Accessibility to treatment center
– Insurance coverage
• Previous therapies
• Prior treatment-related adverse event(s)
Disease Treatment Patient
• Nature of relapse
– Biochemical vs symptomatic
• Risk stratification
– High-risk chromosomal abnormalities: del(17p), t(4;14), t(14;16)
• Disease burden
• Regimen-related toxicity
• Depth and duration of previous response
7. Depth of Response Matters
MRD refers to the persistence of residual tumor cells after treatment and is responsible for relapse1
MR→PR→ VGPR→CR →sCR
1. Adapted from Hauwel M, Matthes T. Swiss Med Wkly 2014:144:w13907 2. Biran N, et al. Curr Hematol Malig Rep 2014;9:368–78
Current techniques can detect MRD with a sensitivity of 10-6 for MM cells2
Measuring Disease Response: IMWG Response Criteria
Negative by next generation flow (NGF) (minimum sensitivity 1 in 10-5 nucleated cells or higher)*
mCR AND normal Free Light Chain ratio, Bone Marrow negative by flow, 2 measures
CR AND negative PCR
Complete Response: Negative immunofixation (IFE); no more than 5% plasma cells in BM; 2 measures
Very Good Partial Response: 90% reduction in myeloma protein
Partial Response: at least 50% reduction in myeloma protein
Minimal Response
Stable Disease: Not meeting above criteria
Progressive Disease: At least 25% increase in identified myeloma protein from lowest level
MRD = Minimal Residual Disease sCR = Stringent Complete Response; BM = Bone Marrow
8. Sequencing is Important but not fully Known
We are still learning what is the “optimal” sequence of therapies but it is clear there is no “optimal” sequence as so many variables influence choice
But a few lessons are being learned:
1. In general if a patient is CAR T eligible, it is preferred prior to bispecific antibodies
2. All therapies can be sequenced in any order but it can reduce its efficacy – T cells in particular may need a ”rest”
9. Always include a Quality of Life Discussion
We do not treat myeloma, but PEOPLE! How it affects your life and your preferences is critical and should be considered...
10. Use the Shared Decision Making Model
“The aim of shared decision making is to ensure that:
- Patients understand their options and the pros and cons of those options.
- Patient's goals and treatment preferences are used to guide decisions.”
The Evolution of Myeloma Therapy
VD
Rev/Dex
CyBorD
VTD
VRD KRD
D-VMP
DRD
Tandem ASCT (?)
Nothing
Thalidomide?
Bortezomib
Ixazomib
Lenalidomide
Combinations
D-VRD
Isa-VRD
D-KRD
Isa-VRD “More” induction?
Bortezomib
Lenalidomide
Carfilzomib
Pomalidomide
Selinexor
Panobinostat
Daratumumab
Ixazomib
Elotuzumab
Isatuximab
Belantamab mafodotin*
Melphalan flufenamide*
Idecabtagene autoleucel
Ciltacabtagene autoleucel
Teclistamab, Talquetamab
Elranatamab, Linvoseltamab
Daratumumab?
Carfilzomib?
Lenalidomide + PI
ASCT, autologous stem cell transplant; CAR, chimeric antigen receptor; Cy, cyclophosphamide; d- daratumumab; D/dex, dexamethasone; isa, isatuximab; K, carfilzomib; M, melphalan; PD-L1, programmed death ligand-1; PI, proteasome inhibitor; Rev, lenalidomide; V, bortezomib.
Speaker’s own opinions.
CAR T Cell Therapy
Bispecific/Tri-specific
Antibodies
Cell Modifying Agents
Venetoclax
PD/PDL-1 Inhibition?
Small Molecules
* These agents are currently off the market but available through special programs
Anito-cel
Cevostomab
Iberdomide, Mezigdomide
Sonrotoclax
KLN-1010
AZD0120
SCAN THIS QR CODE FOR KEY IMF RESOURCES
Helpful Links to:
• Slides from today’s programming
• Evaluations for this program
• SparkCures Search Engine specific for the Salt Lake City region
• Ways to Give
LUNCH
SCAN THIS QR CODE FOR KEY IMF RESOURCES
Helpful Links to:
• Slides from today’s programming
• Evaluations for this program
• SparkCures Search Engine specific for the Salt Lake City region
• Ways to Give
MYELOMA: PUTTING THE PIECES OF THE PUZZLE
TOGETHER
IMF NURSE LEADERSHIP BOARD
KIM NOONAN, DNP, ANP-BC, AOCN, FAAN
VNA CARE & SIMMONS UNIVERSITY, BOSTON, MA
Myeloma: Putting the Pieces of the Puzzle Together
Myeloma Basics NDMM Treatment
Living Well
Treatment Managing Symptoms .
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 & Symptoms
Anxiety
Stress
Depression
Decreased red blood cells
Decreased white blood cells
Anemia & Fatigue
Immune Dysfunction & Infection
Myeloma protein in blood and urine
Changes in bone remodeling
Clonal myeloma plasma cells can cause many symptoms
• Crowd out normal bone marrow cells
• Produce myeloma protein
• Can cause kidney dysfunction
• Affect bone cells (balance of osteoclasts & osteoblasts)
Renal Dysfunction
Bone Damage
Infections Are Serious for People with Myeloma
Preventing infections is paramount.
Infection remains the leading cause of death in patients with multiple myeloma. Several factors account for this infection risk, including the overall state of immunosuppression from multiple myeloma, treatment, age, and comorbidities (e.g., renal failure and frailty).
Report fever of more than 100.4°F, shaking chills even without fever, dizziness, shortness of breath, low blood pressure to HCP as directed.
IMWG Consensus guidelines and recommendations for infection prevention in multiple myeloma; Lancet Haematol.2022;9(2):143–161.
Infection Prevention Tips
Good personal hygiene (skin, oral)
Environmental control
(avoid crowds and sick people; use a high-quality mask when close contact is unavoidable)
As recommended by your healthcare team:
Immunizations:
Flu, COVID, RSV & and pneumococcal vaccinations; avoid live vaccines
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
Kidney and Bone Health
Protect Kidney Function
Myeloma Treatment
Stay hydrated--drink water
Avoid certain medications
• IV contrast dyes
• NSAIDs like Advil (ibuprofen), Aleve (naproxen)
Be alert: symptoms of kidney dysfunction
• Fatigue and weakness
• Nausea and vomiting
• Foamy or dark urine
• Swelling in feet, ankles, or face
• Shortness of breath
• Persistent itching
• Loss of appetite
• Muscle cramps
• High blood pressure
Protect Bone Health
• Myeloma Treatment
• Nutrition
• Vitamin D
• Calcium (if approved by doctor)
• Weight-bearing activity (e.g., walking, standing, climbing stairs, stretching, dancing)
• Bone-strengthening agents (prescribed by your healthcare team)
Report any new or worsening bone pain to your healthcare provider
Pain Management
Pain can significantly compromise quality of life and add to distress.
Sources of pain include bone disease, neuropathy and medical procedures.
Prevention
• Decrease fracture risk through myeloma treatment, bone strengthening agents, physical activity, preventative surgery
• Prevent Nerve Damage: prevent shingles, manage diabetes, myeloma medication dosing and route of administration
• Combine scheduled medical procedures, when possible (Ex. blood draw, biopsy), use sedation if available
Treatment
Interventions depend on source of pain, may include
• Medications, Surgery, Radiation therapy, etc.
• Physical therapy & continued activity, complementary therapies (Mind-body, meditation, yoga, supplements, acupuncture, etc.)
• Scrambler therapy for neuropathy
Discuss with your healthcare provider new bone pain or chronic pain that is not well controlled and decreasing pain medication if pain has improved.
Nature of Myeloma
HR-SMM = high risk smoldering multiple myeloma; M-protein = monoclonal protein; MGUS = monoclonal gammopathy of undetermined significance; misc = miscellaneous (no dominant clone); MM = multiple myeloma; SMM = smoldering multiple myeloma.
Adapted from Durie B. Keats JJ, et al. Blood. 2012;120(5):1067-1076.
Why Shared Decision Making in Multiple Myeloma?
“The
aim of shared decision-making is to ensure that:
- Patients understand their options and the pros and cons of those options.
- Patient's goals and treatment preferences are used to guide decisions.”
The nature of multiple myeloma means patients and their care partners may have multiple points to make decisions about treatment
People with myeloma are living longer; goals, preferences, and values may change over time
Patient and Care Partner’s Roles in Shared Decision Making
Ask questions (write them down in advance of visit)
• What are my treatment options?
• What are the pros and cons of each option? Efficacy? Side effects? Administration? Insurance nuances?
• Are there treatments that wouldn’t be a good option for me? Why?
Express your desire to participate in the treatment decisions
• I want to make sure the treatment we chose is the best option for me
• I want to be sure we a choosing the best therapy for my husband/wife
Ask for time (if needed/ appropriate)
• There is a lot to think about. Can I/we have some time to consider the options?
• Ask for information you can consider at home
• Note: if medical emergency/high risk, may not be appropriate
IMF Has Resources to Help You Be A Part of Your Treatment Decisions
• Be empowered to be part of decision-making
• Stay informed, understand options
• Use reliable and current sources of information
• 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
New Option: Treatment for High-Risk Smoldering Multiple Myeloma (HR-SMM)
High-Risk SMM
High potential to progress to active MM in 2 years
• M-spike ≥ 2 g/dL
• Free light chain assay (involved/uninvolved ratio ≥ 20)
• Bone marrow ≥ 20% clonal plasma cells
51% Reduction in risk of disease progression or death with Darzalex Faspro® treatment of high-risk SMM (compared with active monitoring)
FDA approved Nov2025
DARZALEX FASPRO® as monotherapy is indicated for the treatment of adult patients with high-risk smoldering multiple myeloma
FDA = US Food and Drug Administration; MM = multiple myeloma; SMM = smoldering multiple myeloma
Dimopoulous MA, et al. N Engl J Med. 2024;394(18):1777-1788. doi: 10.1056/NEJMoa2409029. Mateos, MV, et al. Blood Cancer J. 2020;10:102. (2020). https://doi.org/10.1038/s41408-020-00366-3 Use shared decision-making with your provider to determine if treatment is right for you.
Treatment of Newly Diagnosed Multiple Myeloma (NDMM)
Initial treatments aimed at reducing the amount of myeloma cells
Intensification of treatment to deepen response. Either additional cycles of induction or autologous stem cell transplant (in eligible patients) 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.
Prolonged lower-intensity treatment designed to sustain remission
Induction Standard of Care
Quadruplet therapy is preferred for nearly all patients with newly diagnosed myeloma
1 2 3 4
Anti-CD38 monoclonal antibody (mAb)
• Darzalex (daratumumab)
• Sarclisa (isatuximab)
Proteosome Inhibitor (PI)
• Velcade (bortezomib)
• Kyprolis (carfilzomib)
At infusion clinic: subcutaneous injection or on body device or infusion
Supportive medication:
Immunomodulatory drug (IMiD)
Revlimid (lenalidomide)
• Pomalyst (pomalidomide)
• 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: An Important Piece of the Treatment Plan
Steroids enhance the effectiveness of other myeloma therapies
Your provider may decrease or discontinue the dose as myeloma responds to therapy. Do not stop or alter your dose of steroids without discussing it with your provider
Possible Steroid Side Effects
• Irritability, mood swings, depression
• Difficulty sleeping (insomnia), fatigue
• Blurred vision, cataracts
• Increased risk of infections, heart disease
• Muscle weakness, cramping
• Increased blood pressure, water retention
• Flushing/sweating
• Stomach bloating, hiccups, heartburn, ulcers, or gas
• Weight gain, hair thinning/loss, skin rashes
• Increased blood sugar levels, diabetes
Managing Steroid Side Effects
• Consistent schedule (AM vs. PM)
• Take with food
• Stomach discomfort: Overthe-counter or prescription medications
• Medications to prevent shingles, thrush, or other infections
Rajkumar SV, et al. Lancet Oncol 11(1):29–37. King T, Faiman B. Clin J Oncol Nurs. 2017;21(2):240-249. Banerjee,R. et al. Blood 9.25.24
Peripheral Neuropathy
Peripheral neuropathy happens when there is damage to nerves in the extremities (hands, feet, limbs). Damage can be the result of myeloma, treatment or unrelated conditions (i.e., diabetes).
Symptoms:
Numbness
Tingling
Prickling sensations
Sensitivity to touch
Burning and/or cold
sensation
Muscle weakness
Prevention / management:
Bortezomib once-weekly and/or subcutaneous administration
Massage area with cocoa butter regularly
Neuroprotective Supplements
• i.e., B-complex vitamins (B1, B6, B12)
Safe environment: rugs, furnishings, shoes
If neuropathy worsens, your provider may:
Adjust your treatment plan
Prescribe oral or topical pain medication
Suggest physical therapy
Blood Clots: Managing DVT and PE Risk
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
Stem Cell Transplant
ELGIBILITY
Location: Transplant Center P H A S E 1
Measuring treatment response Testing for Eligibility
Insurance authorization Collecting stem cells
Duration: Approximately 2 weeks
P H A S E 2
TRANSPLANT
HD-Melphalan Stem cell infusion Supportive Care
• GI Management
• Transfusions
• Antibiotics
Hair Loss Engraftment
Duration: Approx. 3-4
weeks Location: Transplant Center
Location: HOME P H A S E 3
Restrengthening Appetite recovery
“Day 100” assessment
Begin maintenance therapy
Duration: Approximately 1012 weeks
Stem cell transplant after induction remains the standard of care for eligible patients
GI Symptoms: Prevention & Management
Fluid intake can help with both diarrhea and constipation and helps kidney function
Constipation is more common in the induction phase
Opioid pain relievers, antidepressants, heart or blood pressure medications (check with provider, pharmacist)
Supplements: Calcium, Iron, vitamin D (rarely), vitamin B-12 deficiency
Increase fiber
Stay well hydrated
Fruits, vegetables, high fiber whole grain foods
Fiber binding agents – Metamucil® ,
Citrucel®, Benefiber®
Anorexia, the inability to eat, is common during transplant and resolves with time.
• Hydration is most important
• Small, frequent meals with a focus on protein intake
• You will work closely with a dietician to help monitor your calorie intake
Diarrhea is common during transplant and long-term maintenance therapy.
Other medications and supplements can cause GI issues.
Hydration is very important
Electrolyte replacement is common
Good skin care will help prevent irritation
Stool exam may be needed to rule-out infection
If no infection, anti-diarrheal medication may be prescribed
Discuss GI issues with healthcare providers to identify causes and adjust medications and supplements
Smith LC, et al. Clin J Oncol Nurs. 2008;12(3)suppl:37-52. Faiman B. Clin J Oncol Nurs. 2016;20(4):E100-E105.
MRD Testing: The Big Picture
Minimal Residual Disease (MRD) Testing
• Can provide information on how well treatment is working
• Is recommended after each treatment stage (e.g., after induction, consolidation, maintenance)
• Should be initiated only at the time of suspected complete response.
At Myeloma Diagnosis
Myeloma cells (purple) crowd out normal bone marrow cells (peach)
Complete Response
No detectable myeloma protein <5% myeloma cells in bone marrow
MRD negative
10-5 = <1 myeloma cell in 100,000 10-6 = <1 myeloma cells in 1,000,000
Treatment Options at Relapse
Myeloma Therapy
Common Combinations or Therapy Names
Belantamab mafodotina BVd, BPd, BKRd
Bortezomib (SQ admin)
Carfilzomib
Car T-cell
Daratumumab
Elotuzumab
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
Many therapy options are in the myeloma toolkit and more are being studied
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
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.
CAR T-Cell Therapy T-Cell Engager (TCE) Therapy
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.
CAR T and Bispecific Antibodies: Known Side Effects
CYTOKINE 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
• Headache
• Difficulty concentrating
• Lethargy
• Agitation
• Hallucinations
• Tremors
• Confusion
• Memory loss
Neurotoxicit
PREVENTION AND MANAGEMENT of CRS
• Disease management to reduce tumor burden
• Bispecific Step-up Dosing (SUD)
• Tocilizumab
• Steroids
• Anti-Seizure medications
• Close monitoring
• Aphasia (difficulty with speech, reading, writing, or understanding language)
• Personality change
• Delayed Neurotoxicity can include Parkinsonism, Cranial Nerve Palsies and Peripheral Neuropathy/Guillan Barré syndrome (GBS)
CAR = chimeric antigen receptor. ICANS = Immune Effector Cell-Associated Neurotoxicity Syndrome Brudno JN, Kochenderfer JN. Blood. 2016;127(26):3321-3330. Lee DW, et al. Biol Blood Marrow Transplant. 2019;25:625638. Kumar, et al. Blood (2024) 144 (Supplement 1): 4758.
Infection: Medications Can Reduce Risk
Type of Infection Risk
Medication Recommendation(s) for Healthcare Team Consideration
Viral: Herpes Simplex (HSV/VZV); CMV Acyclovir prophylaxis
Bacterial: blood, pneumonia, and urinary tract infection
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
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 GCSF 2 or 3 times/wk (or as frequently as needed) to maintain ANC > 1000 cells/μL and maintain treatment dose intensity
Some people receiving BCMA-targeting therapies have experienced infections that are less common like CMV, PJP and fungal infections
ANC = absolute neutrophil count; BCMA = B-cell maturation antigen; CAR = chimeric antigen receptor; CMV, cytomegalovirus; GCSF = granulocyte colony-stimulating factor; HSV = herpes simplex virus; IVIg = intravenous immunoglobulin;
PJP = Pneumocystis jirovecii pneumonia; VZV = varicella zoster virus. Raje NS, et al. Lancet Haematol.2022;9(2):143–161.
Management of Oral Side Effects
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
Dental 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.
Catamero D, Purcell K, Ray C, et al. Presented at the 20th International Myeloma Society (IMS) Annual Meeting Nurse Symposium; September 27–30, 2023; Athens, Greece.
Management of Skin and Nail Side Effects
Possible side effect to some treatments and supportive care medications
Skin Rash
Prevent dry skin; apply lotion
Report changes to your care team
Medication interruption or alternative, as needed
Steroids:
• Topical for grades 1-2,
• Systemic and topical for Grade 3
Antihistamines, as needed
Nail Changes
Keep your nails short and clean.
Watch for “catching and tearing”
Apply a heavy moisturizer like Vaseline or salve. Wear cotton hand coverings to bed
A nail hardener may help with thinning
Tell the team if you have signs of a fungal infection, like thickened or discolored nails
Healthy Practices: Part of the Big Picture
Adopt Healthy Behaviors
• Mental health / social engagement
• Stress reduction; relaxation
• Sufficient Sleep
• Maintain a healthy weight; eat nutritiously
• Activity / exercise / prevent falls, injury
• Stop smoking
• Sexual health / intimacy
• Complementary or alternative therapy
• Socialize and Connect with others
Have a PCP for general check ups, preventative care, health screenings, vaccinations
Have specialists for dental care, eye exams/screening, skin cancer screening
Recommended Health Screenings
Blood pressure
Cholesterol
Cardiovascular disease Colonoscopy Dental checkups & cleaning
Dermatologic evaluation
Diabetes
Hepatitis
Hearing
Vision
Women specific: mammogram, pap smear
Men specific: prostate
Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Dimopoulous M, et al. Leukemia. 2009;23(9):1545-56.
Brigle K, et al. CJON. 2017;21(5)suppl:60-76. Faiman B, et al. CJON. 2017;21(5)suppl:19-36. Faiman B, et al. CJON. 2011;15suppl:66-76. Miceli TS, et al. CJON. 2011;15(4)suppl:9-23.
Care Partners: Essential Pieces of the Puzzle
Multiple studies demonstrate that strong social ties are associated with
• Increased longevity including people with cancer
• Improved adherence to medical treatment leading to improved health outcomes
• Lower risk of cardiovascular diseases
• Increased sense of purpose & life satisfaction
• Improved mood and happiness
• Reduced stress and anxiety
• Enhanced resilience
Care partners may help with medical appointments, managing medication, daily living, physical assistance, emotional support, myeloma knowledge, healthy lifestyle, patient advocacy, financial decisions
Care partners can be a spouse, close relative, a network of people (family, friends, neighbors, church members, etc)
Caring for the care partner
• Recognize that caregiving is difficult and stressful
• Encourage care partners to maintain their health, interests, and friendships
• The IMF has information and resources to help care partners
IMF Tip Cards
“THANK YOU!”
LIVING THE MYELOMA LIFE: LOCAL PATIENT AND CARE PARTNER STORY
RUTH CENTURIER-HARRIS (PATIENT ADVOCATE)
JONO CENTURIER-HARRIS (CARE PARTNER) ABI &
(FAMILY)
LIVING THE MYELOMA LIFE
(MORE THAN MYELOMA)
THE UNSEEN IMPACT OF MYELOMA:
TAKING CARE OF YOUR EMOTIONAL HEALTH
BECKY BOSLEY, BSN, RN
IMF SENIOR DIRECTOR, SUPPORT GROUPS
Disclaimer
The International Myeloma Foundation Support Group Team presents this information to support learning and conversations with your healthcare team.
This presentation is for informational purposes only and is not intended to provide medical advice or replace guidance from your medical providers.
Common Emotional Responses
The Spectrum of Emotions
Coping with your Emotions
Grounding Exercises
AGENDA
When & Where to Seek Help
Wellness Tips & Resources for Support
Questions & Discussion
COMMON EMOTIONAL RESPONSES
Myeloma is often seen through the lens of physical symptoms, treatments, and survival rates.
Beneath the surface of this medical battle lies a profound emotional journey that affects not only the person diagnosed but also their loved ones.
Initial Feelings
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/
Shock & Disbelief
Some patients describe a feeling of numbness or surrealism after a cancer diagnosis; unable to fully grasp the weight of the news.
• Confusion
• Disconnection
• Denial
Anger
It is completely normal to experience anger towards:
• Doctors
• Healthcare team
• Yourself
• God
Fear & Worry
Patients describe many fears after a myeloma diagnosis, including:
• Fear of death and dying
• Fear of pain or treatment
• Fear of rejection/loneliness
• Fear about the future
• Practical worries (finances, housing, career, etc.)
Grieving Shifts in Identity
• Side effects like fatigue, hair loss, nausea, and cognitive changes can strip away one’s sense of normalcy and identity.
• Some people feel isolated as they withdraw from social activities, work, or relationships due to physical limitations or emotional distress.
• The loss of independence and routine can be demoralizing and defeating.
Relationship Challenges
• Cancer can significantly impact relationships with partners, family, friends, and coworkers.
• Some people may not know how to respond or offer support, leading to awkwardness, discomfort, or distance.
• Care partners can also experience emotional exhaustion, guilt, and helplessness as they witness their loved one's suffering.
Anxiety
Symptoms of anxiety include:
• ruminating about a specific fear
• sleep disturbance
• feeling restless or edgy
• irritability
• being easily fatigued or overstimulated
• difficulty concentrating or forgetfulness
Depression
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
Prevalence of Depression
• In the US, 23.1% of the general population meet criteria for a diagnosis of a mental health disorder.
• Over 56% of patients living with blood cancers experience anxiety and depression
THE SPECTRUM OF EMOTIONS
Finding Value in the Challenge
• This is never about suggesting the illness itself is “good” or that someone should suffer.
• Rather, it’s about recognizing that within extremely difficult or unwanted experiences, people sometimes discover forms of meaning, strength, connection, or clarity.
Emotional and Spiritual Growth
Research in psycho-oncology shows that post-traumatic growth is surprisingly common. People sometimes describe:
• A greater appreciation for life’s small moments
• New or deepened spiritual beliefs
• A sense of inner strength they didn’t know they had
• Increased empathy or patience
Suffering forces confrontation with vulnerability and uncertainty, and some individuals emerge with a transformed worldview.
Healing Versus A Cure
• We may not yet have a cure for myeloma, and the reality is our physical bodies are never perfect, but we can experience emotional or spiritual healing in the midst of this journey.
• Consider for yourself what it would mean to engage in “healing.”
Hope & Empowerment
Cancer strips away control, but in that loss, people often find a different kind of agency:
• Choosing how to spend meaningful time
• Choosing how to speak about their experience
• Choosing how they meet uncertainty emotionally and spiritually
The struggle becomes a teacher of resilience and presence.
Purpose Through Helping Others
A powerful source of meaning comes from turning personal suffering into support for others:
• Advocating
• Volunteering
• Leading a support group
• Sharing one’s story
• Helping someone newly diagnosed
The idea of “I can use what I’ve been through” gives suffering a sense
of direction.
COPING WITH YOUR EMOTIONS
Coping with Heavy Emotions
• Awareness
• Identify
• Accept
• Recognize
• Stay Curious
• Let go
Coping with Heavy Emotions
Don’t feel that you have to be “strong.”
If you feel tired, lonely, anxious, depressed, angry, etc., acknowledge your feelings and talk about them. If all you want to do is cry, then go ahead.
Crying is a natural catharsis.
Grief & Gratitude
“The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.
How much sorrow can I hold? That’s how much gratitude I can give. If I carry only grief, I’ll bend toward cynicism and despair. If I have only gratitude, I’ll become saccharine and won’t develop much compassion for other people’s suffering.
Grief keeps the heart fluid and soft, which helps make compassion possible.”
-Francis Ward Weller
GROUNDING TECHNIQUES
Emotional Grounding Techniques
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
WHEN & WHERE TO SEEK HELP
Practical Help
Think about what you need. Lots of people will want to help but don’t know how.
• Practical needs
• Financial help
• Emotional support
When to Seek Professional Help
Your mental health is as important as your physical health!
Tell your healthcare team or another medical professional if you need support.
Ask if your hematology/oncology clinic employs a clinical social worker or counselor. Emotional support and therapy services are available at many clinics.
WELLNESS TIPS & RESOURCES FOR SUPPORT
Support Groups Provide a Sense of Belonging
• Included
• Welcomed
• Connected
• Accepted
• Involved
• Supported
• Heard
• Valued
• Seen
• Hopeful
Wellness Tips
Talk to friends and family, and others you trust
Ask for help and be specific about what you need Join a support group
Get education and information only from reliable/reputable sources
Take time for yourself
Spend time with supportive friends
Celebrate every victory!
Resources
Talk with your doctor to determine what plan of action works best for you. Medications could potentially be part of a treatment plan that you and your doctor work on together.
If you think therapy/counseling could be beneficial, ask for a referral or check out websites/platforms such as:
• Headway
• Better Help
• Talkspace
• CaringBridge
• Psychology Today
Q&A WITH GUEST PANEL
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