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Myeloma ASCT Informed Consent???
Myeloma patients having an ASCT may be asked to sign an informed consent form. I signed a consent form before my aut0logous stem cell transplant. I’m pretty sure this is standard procedure these days.
While the study linked at the bottom of this post gives some basic information about the consent form for ASCT, it isn’t clear about the topic of this post.
The short video below explains this basic, important issue more plainly. And that issue is:
*Consent must be informed- particularly “the risks and possible side effects”
It is my contention and experience that oncologists, even MM specialists, don’t explain the possible long-term side effects to MM patients considering ASCT. Newly diagnosed MM patients don’t know what they don’t know. NDMM patients might hear about peripheral neuropathy or chemobrain and think they understand it but they can’t really until they experience it themselves.
Many patients ask online groups about whether or not they should have an ASCT. I believe that if the patient asking this question was fully informed about the possible long-term side effects of ASCT, the average newly diagnoses myeloma patient would gladly undergo “novel therapies” rather than ASCT.
Keep in mind that I’m focusing exclusively on long-term side effects of ASCT. Most people are familiar with short term side effects such as nausea, alopecia and diarrhea. Unfortunately most patients are not familiar with
- Chronic fatigue (permanent)
- Heart damage (permanent)
- Chronic kidney disease (permanent)
to name of few long-term side effects.
Informed Consent
What are all possible long-term side effects from autologous stem cell transplantation?
Possible Long-Term Side Effects of ASCT:
1. Immune System and Infection Risks
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Delayed immune recovery: The immune system may take months to years to fully recover, increasing the risk of infections.
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Chronic infections: Patients may be more prone to viral reactivations (e.g., shingles, Epstein-Barr virus) or recurrent bacterial infections.
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Autoimmune complications: In some cases, immune dysfunction may lead to conditions like autoimmune cytopenias.
2. Secondary Cancers
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Increased risk of secondary malignancies: The high-dose chemotherapy and radiation used before ASCT may increase the risk of secondary cancers, including leukemia (e.g., therapy-related myelodysplastic syndrome or acute myeloid leukemia) and solid tumors.
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Skin cancers: Due to immune suppression and prior radiation exposure.
3. Organ Damage and Dysfunction
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Heart (Cardiotoxicity): High-dose chemotherapy, especially with agents like anthracyclines, can lead to heart disease, arrhythmias, or heart failure.
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Lungs (Pulmonary toxicity): Some treatments may cause lung scarring or inflammation, leading to conditions like pulmonary fibrosis.
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Liver (Hepatic complications): Chemotherapy can damage the liver, leading to liver function abnormalities or conditions like veno-occlusive disease.
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Kidneys (Nephrotoxicity): Certain chemotherapy agents may lead to chronic kidney disease or reduced kidney function.
4. Endocrine and Metabolic Issues
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Hormonal imbalances: Damage to the endocrine glands (thyroid, adrenal, or pituitary) can lead to conditions like hypothyroidism or adrenal insufficiency.
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Infertility: Many patients experience permanent infertility due to high-dose chemotherapy.
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Bone loss (Osteoporosis): Steroids, chemotherapy, and reduced activity may contribute to bone thinning and increased fracture risk.
5. Neurological and Cognitive Effects
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Peripheral neuropathy: Some chemotherapy agents can cause long-term nerve damage, leading to tingling, numbness, or pain in the hands and feet.
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Cognitive impairment (“chemo brain”): Difficulties with memory, concentration, and processing speed may persist for months or years.
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Mood disorders: Depression, anxiety, or PTSD-like symptoms can occur due to the physical and emotional stress of treatment.
6. Fatigue and Quality of Life Issues
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Chronic fatigue: Many patients report ongoing fatigue that can persist long after treatment.
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Muscle weakness: Reduced physical activity and chemotherapy-related damage can lead to muscle loss.
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Psychosocial effects: Patients may experience anxiety about relapse, body image changes, or difficulty returning to work or daily activities.
While many of these side effects can improve over time with appropriate medical management, some may be permanent. Long-term follow-up with healthcare providers is essential for monitoring and managing these risks. Would you like more information on managing any specific side effects?
Full disclosure, the list of my own long-term side effects is long. Yes, I am biased. I understand first hand, the life changing difficulties that come with aggressive myeloma therapies.
Email me at David.PeopleBeatingCancer@gmail.com with questions that you may have about your MM therapy plans.
Hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation?
Abstract
“Hematopoietic cell transplantation (HCT) is a complex and highly specialized medical treatment that is associated with significant risks, including death. Furthermore, transplantation is offered to patients who often have no other curative treatment alternatives.
The routine-consent process for HCT typically occurs before HCT and is influenced by many factors related to patients, physicians and the transplant per se. These factors can impede the consent process and subsequently result in a failure of proper engagement in and an understanding of the procedure with resultant adverse consequences influencing patients and even the patient–physician relationship.
We contend that informed consent is a dynamic and ongoing process and that better patient education can assist in the decision making, fulfill the ethical principle of respect for autonomy and engage the patient to maximize compliance and adherence to therapy.
This manuscript reviews the key literature pertaining to the decision-making and consent process in HCT and proposes guidelines for improving the consent process. Strategies for improving patient comprehension, engagement and enhancing consent forms are discussed.”
myeloma ASCT informed consent myeloma ASCT informed consent myeloma ASCT informed consent