Full Chapter Event Recording: The Caregiver's Role in AML Symptom Management

On July 20th, 2022, Dr. Sara Tinsley-Vance joined the AML Caregiver Chapter to teach us about the caregiver's role in symptom management. 

Watch the Full Event Here:

Event Summary

In this recording, Dr. Tinsley Vance provides a high level overview of common AML symptoms, emphasizes the critical symptoms you as a caregiver don’t want to miss, reviews how blood counts are affected in relation to symptoms and provides you as a caregiver a process for evaluating your loved one symptoms. 

Here are Some of the Highlights:

• Caregiving is almost a full time job. Cancer caregivers spend an average of 32.9 hours a week caring for their loved one.
• There are many unique caregiving challenges with AML. Symptoms are vague so it’s tough to know which symptoms are related to AML and which are not. AML is a rare cancer (1% of all cancer cases) so finding accurate information on AML can be difficult. AML is not a solid tumor so the cancer is not in just one place in the body. AML treatment and monitoring requires very frequent trips to the clinic or hospital.
• Essential items for the caregiver to track: up-to-date medication list (including over the counter medications and supplements), allergy list (include the type of reaction), current symptoms (when they started and which are the most distressing). These can be tracked by hand or using an app but it's easier if everything is kept all in one place.
• Common symptoms seen in AML patients for caregivers to be aware of: fatigue, nausea, hopelessness, shortness of breath, fever, bone pain, depression, anxiety, bleeding, difficulty sleeping, drowsiness
• Tips for managing fatigue: Choose interventions that take care of both the mind AND the body. Work with your loved one's medical team to normalize blood counts as much as possible. Transfusions often help reduce fatigue. Encourage some form of physical activity if cleared by the AML team. Medications such as methylphenidate and dexmethylphenidate have been used. Antidepressants haven show mixed results. Steroids have not been studied for fatigue in AML but have improved fatigue in other cancers. There is no consensus for supplement recommendations, and you should proceed with caution as some supplements may affect the blood counts. In order to treat the mind, establish coping strategies for anxiety, depression and distress. Find a balance between fatigue and activity. Help your loved one identify their fatigue patterns. Encourage journaling and rating fatigue levels when engaging in various activities. Consider cognitive behavioral therapy.
• Tips for managing nausea and vomiting: identify triggers, adjust medication list, time anti-nausea medications appropriately, group anti-nausea medications together so you can get to them quickly, track the times each medication is taken, avoid smells from foods that are triggers, monitor fluid intake and identify risk for dehydration. Be prepared for traveling by giving nausea medication prior to travel if motion makes it worse. Pack wipes, a change of clothes, a disposable bag, ginger chews, light snacks and liquids. Acupressure, aromatherapy, ginger (use with caution when platelets are low), hypnosis are alternative therapies that may also help.
• Tips for managing fever: if neutrophils are <500 and your loved one has a fever (>100.9 or >100.4 for greater than an hour) this can be life threatening and you should seek immediate medical attention. Always contact the healthcare team if your loved one is experiencing confusion. If your loved one has a fever without neutropenia, report symptoms like cough, shortness of breath, chills, confusion or changes in appetite to the medical team.
• Tips for managing hopelessness: The caregiver’s role is to listen, support and encourage. Also try to encourage involvement of a social worker and/or chaplain.
• Tips for managing pain: speak with healthcare team about how the pain is affecting your loved one. Avoid tylenol or NSAIDS until discussed with health care team because these medications can mask fever and increase risk of bleeding.

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