THE WORDS - LLSC · HOW LONG DOES IT LAST? Cancer related fatigue can start with the disease itself...

41
THE“F” WORDS Facing Fatigue and Brain Fog Rachelle Ramsay BScN, RN, COnc webcast

Transcript of THE WORDS - LLSC · HOW LONG DOES IT LAST? Cancer related fatigue can start with the disease itself...

Page 1: THE WORDS - LLSC · 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

THE“F” WORDSFacing Fatigue and Brain Fog

Rachelle RamsayBScN, RN, COnc

webcast

Page 2: THE WORDS - LLSC · 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

LLSC MISSION

Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of

patients and their families.

Page 3: THE WORDS - LLSC · 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

LLSC offers support throughout a patient’s journey.

OUR PROMISE

Page 4: THE WORDS - LLSC · 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

RESOURCES FOR YOUllscanada.org

Page 5: THE WORDS - LLSC · 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

35 Research projects

(2018)

Approx. $40 M since 1955

FUNDING RESEARCH

Page 6: THE WORDS - LLSC · 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

SPEAKERRachelle Ramsay, BScN, RN, COnc

Tom Baker Cancer Centre

Page 7: THE WORDS - LLSC · 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

REFLECT FOR A MOMENT

Page 8: THE WORDS - LLSC · 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

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

Page 9: THE WORDS - LLSC · 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

FATIGUE

Page 10: THE WORDS - LLSC · 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

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)

Page 11: THE WORDS - LLSC · 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

WHAT DOES CANCER-RELATED FATIGUE LOOK LIKE?

Page 12: THE WORDS - LLSC · 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

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

Page 13: THE WORDS - LLSC · 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

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

Page 14: THE WORDS - LLSC · 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

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

Page 15: THE WORDS - LLSC · 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

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

Page 16: THE WORDS - LLSC · 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

THE GLASS HALF FULL

There is GOOD NEWS

There are things that you can do to help manage your fatigue!

Page 17: THE WORDS - LLSC · 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

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

Page 18: THE WORDS - LLSC · 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

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

Page 19: THE WORDS - LLSC · 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

BRAIN FOG

Page 20: THE WORDS - LLSC · 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

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

Page 21: THE WORDS - LLSC · 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

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

Page 22: THE WORDS - LLSC · 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

VERY COMPLEX PROCESS

Page 23: THE WORDS - LLSC · 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

WHAT DOES BRAIN FOG LOOK LIKE?

Page 24: THE WORDS - LLSC · 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

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

Page 25: THE WORDS - LLSC · 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

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

Page 26: THE WORDS - LLSC · 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

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

Page 27: THE WORDS - LLSC · 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

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

Page 28: THE WORDS - LLSC · 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

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)

Page 29: THE WORDS - LLSC · 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
Page 30: THE WORDS - LLSC · 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

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

Page 31: THE WORDS - LLSC · 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

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

Page 32: THE WORDS - LLSC · 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

PROMOTING OVERALL HEALTH

Adequate rest

Physical activity +/- being outdoors

Being open to social support

Maintain adequate nutrition

Engaging in mentally stimulating activities

Page 33: THE WORDS - LLSC · 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

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

Page 34: THE WORDS - LLSC · 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

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

Page 35: THE WORDS - LLSC · 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

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

Page 36: THE WORDS - LLSC · 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

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

Page 37: THE WORDS - LLSC · 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

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

Page 38: THE WORDS - LLSC · 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

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

Page 39: THE WORDS - LLSC · 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

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

Page 40: THE WORDS - LLSC · 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

QUESTIONS?

Page 41: THE WORDS - LLSC · 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

WE CAN HELP

LLSCANADA.ORG

Watch all of our webcasts on our website!