the words - llsc · how long does it last? cancer related fatigue can start with the disease itself...
TRANSCRIPT
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THE“F” WORDSFacing Fatigue and Brain Fog
Rachelle RamsayBScN, RN, COnc
webcast
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LLSC MISSION
Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of
patients and their families.
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LLSC offers support throughout a patient’s journey.
OUR PROMISE
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RESOURCES FOR YOUllscanada.org
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35 Research projects
(2018)
Approx. $40 M since 1955
FUNDING RESEARCH
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SPEAKERRachelle Ramsay, BScN, RN, COnc
Tom Baker Cancer Centre
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REFLECT FOR A MOMENT
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THE PRESENTATION
We’ll discuss some of the big F words in cancer care and treatment
To better understand cancer-related fatigue
To learn how to manage fatigue in day-to-day life
To have caregivers understand their role in supporting fatigue management
To acknowledge the validity of brain fog as a real symptom related to cancer and treatment
To learn self management techniques that may help to improve brain fog
To advocate for acknowledgement and further research to be done in the areas of fatigue and brain fog
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FATIGUE
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DEFINING CANCER-RELATED FATIGUE
Fatigue is the general lack of energy, tiredness or exhaustion. It is different from the tiredness a person usually feels at the end of the day. Fatigue is not necessarily related to activity, and may not go away with rest or sleep.
- (Cancer.ca)
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WHAT DOES CANCER-RELATED FATIGUE LOOK LIKE?
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WHAT DOES CANCER-RELATED FATIGUE LOOK LIKE?
You are too tired to do the things that you normally do
Your arms and legs feel heavy and hard to move
You spend more time in bed/sleeping
You feel sad, depressed, or irritable
You feel frustrated with yourself and others
You stay in bed for more than 24h
You feel more tired than usual during your daily activities
You can’t concentrate
You feel tired and its not even related to an activity
You have trouble remembering things
You put less effort into your appearance
You have trouble sleeping
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CANCER-RELATED FATIGUE CAN…
Differ from one day to the next in how bad it is and how much it bothers you
Be overwhelming and make it hard for you to feel well
Make it hard for you to be with your friends and family
Make it hard for you to do things you normally do, including going to work
Make it harder for you to follow your cancer treatment plan
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WHY DOES THIS FATIGUE HAPPEN?
• Multi-factoral• Cancer disease itself
• Cancer treatments ie. Chemotherapy, biotherapies, hormonal therapies, radiation, surgery
• Chemical changes in body
• Increased stress
• Change in sleep patterns
• Decreased movement ie. Physical activity/exercise
• Altered nutrition
• Change in mood
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HOW LONG DOES IT LAST?
Cancer related fatigue can start with the disease itself
It can last during treatment and often worsens the further into treatment a person is especially with combination therapies such as chemo with radiation, surgery, or
transplant
It may last for several months or years after treatment depending on the severity
For most it will start to improve within a couple of months after treatment is complete
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THE GLASS HALF FULL
There is GOOD NEWS
There are things that you can do to help manage your fatigue!
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FATIGUE MANAGEMENT TECHNIQUES
Exercise regularly – it takes energy to make energy
Keep a journal of how you are feeling each day
Plan ahead
Use tools to help you conserve your energy
Let others help you with tasks that need doing
Save your energy for things that you enjoy doing
Balance activity with rest
One short nap
Maintain good sleep hygiene
Eat nutritious energy dense foods
Talk to your healthcare providers
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TIPS FOR CAREGIVERS
Encourage physical activity
Be aware of your loved one’s limitations
Offer to help with day to day tasks so that they can save energy for what they love to do
Help in planning activities to balance rest with activity
Encourage good sleep hygiene/routines
Allow them to express their frustrations and don’t try and fix it
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BRAIN FOG
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WHAT IS BRAIN FOG
Terms you may hear
Chemo brain, chemo fog, brain fog, cognitive impairment, cancer related cognitive dysfunction
Brain fog is a relatively newly recognized concept
Changes in thinking, memory, learning, processing and attention, following cancer diagnosis and/or treatment with chemotherapy
Can be a sudden onset or gradual, may come and go
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WHAT CAUSES BRAIN FOG?
Chemotherapy is not the only cause of “chemo brain”
Radiation, surgery, stem cell transplants, immunotherapy, hormone therapy, fatigue, disease involving brain, nutritional deficiencies etc.
Scientific reasoning
stress on the body triggers inflammation
Inflammatory chemicals cross into brain (cytokines)
causes stress on healthy brain cells
damages cells that help brain cells heal
impaired brain function
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VERY COMPLEX PROCESS
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WHAT DOES BRAIN FOG LOOK LIKE?
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WHAT KIND OF CHANGES DO WE SEE?
Many patients experience difficulty with:
Short-term memory
Multi-tasking
Complex problem solving
Concentration
Mental efficiency
Word finding
Fine motor skills
These changes can be subtle and variable
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HOW COMMON IS IT?
Research estimates range from 15-95% of patients
Can depend on a range of factors
Type and dose of treatment
Medication side effects
Emotional distress
Symptom burden
Co-morbidities
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WILL THIS EVER GO AWAY?
Majority of patients report symptoms fade
or resolve over time
Small number of patients that still
experience long term cognitive
impairments
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HOW DOES THIS AFFECT MY EVERYDAY LIFE
Common challenges in:
Fulfillment of social roles and responsibilities
Enjoyment of daily activities
Returning to work
Self esteem
Relationships
Adherence to health regimens
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HOW DOES THIS AFFECT MY EVERYDAY LIFE
“You have to fight to make yourself remember numbers, words,
places that you go. Sometimes I would leave the house to go somewhere and I really couldn’t remember how to get there…it almost made me break down because of the fact that you think
you’re losing your mind.”Boykoff et al.. (2009)
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WHAT RESEARCH IS TELLING US
There may be factors that predispose certain patients to chemo brain, making it worse for them than others
Cancer itself may contribute to cognitive impairments
There are currently no therapies that are the standard of care to help with brain fog, but some are being studied
Methylphenidate and modafenil (neurostimulant)
Donepezil (used for Alzheimer’s and dementia)
More research is needed to develop reliable tools to predict risk factors and assess for brain fog, and improve prevention and treatments
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SELF-MANAGEMENT STRATEGIES
Exercise your brain
Taking notes
Using a calendar
Smart phones
Plan ahead
Eliminate clutter
Have emergency info and contacts on you
Follow routines/avoid multitasking
Speaking with healthcare team
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PROMOTING OVERALL HEALTH
Adequate rest
Physical activity +/- being outdoors
Being open to social support
Maintain adequate nutrition
Engaging in mentally stimulating activities
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FOR CAREGIVERS & SUPPORTERS
Encourage your loved one to tell you what is going on with their cognitive abilities
Help with self management strategies
Help to maintain loved one’s independence, help when needed/asked
Go with patients to doctors appointments and meetings
Increase awareness of chemo brain/brain fog to others
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SUMMARY
Fatigue is often the most distressing cancer and treatment symptom
It is influenced by many different factors, both physiological as well as psychosocial
It can range from mild to severe and is ever changing throughout one’s cancer journey
There are many management techniques that can help a person cope with cancer related fatigue
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SUMMARY
Changes in cognitive functioning are commonly experienced after cancer treatment
These changes are often subtle but can have significant impacts for patients and families
Cognitive functioning can be influenced by a wide range of factors
There are self management strategies that you can use to help cope with, and manage your cognitive challenges
More research is needed to support determining risk factors, prevention and treatment strategies
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REFERENCES
Asher, Myers. (2015). The effect of cancer treatment on cognitive function. Clinical Advances in Hematology & Oncology, 13(7), 1-9. Retrieved on Oct 14, 2018 from https://www.ncbi.nlm.nih.gov/pubmed/26353040
Bernstein. (2017). Cancer-related brain fog. University Health Network. Retrieved from
https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Cancer_Related_Brain_Fog.pdf
Cancer and Fatigue: Video Series. (2017). Retrieved from
https://myhealth.alberta.ca/alberta/cancer-fatigue
Dietrich, Kaiser. (2016). Cancer, chemotherapy and cognitive dysfunction. US Neurology.doi:http://doi.org/10.17925/USN.2016.12.01.43
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REFERENCES
Dietrich. (2012). Cognitive impairment in patients with cancer. The ASCO Post.
Retrieved on Oct 14, 2018 from http://www.ascopost.com/issues/october-15-2012/cognitive-impairment-in-patients-with-cancer/
Fitch, Mings, and Lee. (2018). Exploring patient experiences and self-initiated strategies
for living with cancer related fatigue. CONJ. doi: 10.5737/1181912x184124131
Ganz. (2011). “Doctor, will the treatment you are recommending cause chemobrain?”.
American Society of Clinical Oncology. doi: 10.1200.JCO.2011.39.4288
Gross. (2007). Chemotherapy fog is no longer ignored as an illusion. The New York
Times. Retrieved on Oct 14, 2018 from https://www.nytimes.com/2007/04/29/health/29chemo.html
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REFERENCES
Hamilton, Butler, Wagenaar, Sveinson, Ward, McLean, Grant, and MacLellan. (2011).
The impact and management of cancer-related fatigue on patients and families. CONJ. doi: 10.5737/1181912x114192198
Jean-Pierre. (2010). Management of cancer-related cognitive dysfunction –
conceptualization challenges and implications for clinical research and practice. US Oncological Review, 2010(6), 9-12. doi:10.17925/OHR.2010.06.0.9
Lucier. (2017). Cancer Transitions: Brain fog. Cancer Control, AHS. Retrieved from
https://myhealth.alberta.ca/health/Pages/HealthVideoPlayer.aspx?List=fde13c02%2D8aa3%2D41ec%2D920d%2Ded3c17022ba8&ID=924&Web=c310c9f6%2D9976%2D4384%2Db2af%2Dd167d98d0966#
Meyers, Albitar, and Eztey. (2005). Cognitive impairment, fatigue, and cytokine levels in
patients with acute myelogenous leukemia or myelodisplastic syndrome. Cancer, 104(4), 788-793. doi:10.1002/cncr.21234
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REFERENCES
Singhal, Jaehne, Corrigan, Toben, and Braune. (2014). Inflammasomes in neuroinflammation and changes in brain function: a focused review. Retrieved on Oct 14, 2018 from https://openi.nlm.nih.gov/detailedresult.php?img=PMC4188030_fnins-08-00315-g0004&req=4
Syrjala, Artherholt, Kurland, Langer, Roth-Roemer, Broeckel, and Dikmen. (2011).
Prospective neurocognitive function over 5 years after allogeneic hematopoietic cell transplantation for cancer survivors compared with matched controls at 5 years. Journal of Clinical Oncology, 29(17), 2397-2404. doi: 10.1200/JCO.2010.33.9119
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QUESTIONS?
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