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Blood clots Underreported- Myeloma?
According to the study linked below, blood clots are underreported in cancer clinical trials. Myeloma patients have to ask themselves if the study below applies to myeloma clinical trials, too.
Blood clots are among the top five causes of death for MM patients and survivors.
What percentage of myeloma patients die of deep vein thrombosis and related events?
🔢 Estimated Mortality from DVT/PE in Myeloma Patients
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Incidence of venous thromboembolism (VTE) (DVT + PE) in MM patients ranges from:
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3–26%, depending on therapy type (particularly higher with immunomodulatory drugs like lenalidomide or thalidomide + steroids or chemotherapy).
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Mortality directly attributable to VTE events (i.e., fatal PE) in MM patients is estimated at:
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1–3% of all MM-related deaths, based on retrospective cohort studies and pharmacovigilance data.
For example:
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A large SEER-Medicare study (2017) reported that VTE-related death occurred in ~1.4% of MM patients.
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Other sources suggest PE accounts for ~2% of early deaths (within 6 months of diagnosis), particularly in patients on high-risk regimens.
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⚠️ Why the Risk Matters Despite Low Mortality
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Although not a leading cause of death, VTE events:
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Increase hospitalization
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May delay or interrupt treatment
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Are associated with worse overall survival if not managed promptly
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🔍 Summary
| Metric | Value |
|---|---|
| VTE incidence (DVT + PE) in MM | 3–26% |
| Mortality directly due to VTE | ~1–3% of MM deaths |
| Increased risk with | Lenalidomide, thalidomide, dexamethasone |
| Prevention | Anticoagulation (aspirin, LMWH, DOACs) during therapy |
My problem with the issue of MM clinical trials understating blood clots is:
- MM patients and survivors depend on clinical trial information and
- Blood clots are largely avoidable.
Full transparency. While undergoing induction therapy, I developed a DVT. I developed another one about two years later. Turns out that the first DVT predisposes the patient to a second DVT.
I am horrified that the research below is so cavalier about the underreporting of adverse events in clinical trials. “Under-reporting of treatment-related adverse events is commonplace in cancer drug trials…”
However, if this is the current state of affairs for MM patients and survivors, all I can say is to look at clinical trial data with a huge grain of salt.
Good luck,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Inconsistent and Inaccurate Cancer Clinical Trial Reporting of Venous and Arterial Thrombotic Events: An Urgent Call to Action
Introduction
Under-reporting of treatment-related adverse events is commonplace in cancer drug trials, which are often accompanied by terms that downplay the seriousness of these events.1–3
Cardiovascular adverse events, both short- and long-term, represent a growing challenge to the survivorship of patients with cancer, prompting societal guidelines aimed at prevention and management of these undesirable outcomes.4
Vascular toxicity, including:
- venous thromboembolism (VTE; eg, deep venous thrombosis [DVT] and pulmonary embolism [PE]) and
- arterial thromboembolism (ATE; eg, acute coronary syndrome, ischemic stroke/transient ischemic attack, or systemic visceral and limb thromboembolism),
is a leading cause of cardiovascular adverse events.
Studies have shown that both VTE and ATE in patients with cancer are associated with decreased survival and significant morbidity.5–8
Morbidity associated with VTE and ATE includes increased risk of hospital admissions and prolonged stays, delays and interruptions in cancer therapy, and increased health care costs.5–8
Analysis of the SEER data on death certificate causes of death from 1973 to 2012 revealed that the risk of non–non-cancer-related death surpassed cancer-related death, particularly for young patients (age 25-44 years).9,10Thromboembolism and infections are tied as the most common non-cancer causes of death.7
Thromboembolic adverse events are preventable…
blood clots underreported in clinical trials blood clots underreported in clinical trials blood clots underreported in clinical trials