Download Cancer is a term used for diseases in which abnormal cells divide

Brain Tumors: A Practical Guide to
Assessment & Treatment
July 19. 2014 – Oxnard
September 27, 2014 – Roseville
8:30 a.m. – 11:45 a.m.
Presenter: Katie L. Buchanan, MS, CCC
[email protected]
Injuries and/or lesions are often described by their location in
the brain in combination with simple Latin prefixes (e.g.
“sub”, “pre”, “intra”)
www.healthcentral.com
Basic functions
of the brain
Often in brain injuries, more
than one area of the brain is
affected. Damage can also be
caused by secondary
complications such as
swelling.
Vasculature of the Brain
The best, most poetic description of the lobes of the brain…
compliments of a recent Mercedes Benz commercial!!!
Back to basics
Cancer: Cancer is a term used for diseases in which abnormal
cells divide without control and are able to invade other tissues.
Cancer cells can spread to other parts of the body through the
blood and lymph systems. (National CA Institute (NCI) at www.cancer.gov)
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• The five subcategories of cancer are:
1)
Carcinoma - cancer that begins in the skin or in tissues that line or
cover internal organs.
2)
Sarcoma - cancer that begins in bone, cartilage, fat, muscle, blood
vessels, or other connective or supportive tissue.
3)
Leukemia - cancer that starts in blood-forming tissue such as the bone
marrow and causes large numbers of abnormal blood cells to be produced and
enter the blood.
4)
Lymphoma and myeloma - cancers that begin in the cells of the
immune system
5)
Central nervous system cancers - cancers that begin in the tissues of
the brain and spinal cord. (NCI)
All cancer cells can be placed into one of these subcategories.
Stats and potential causes
Statistics:
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More than 200 types of cancers in
existence
There are more than 120 types of
PRIMARY brain tumors (NCI, 2011)
More than 80% of patients in clinical trials
experienced speech, language and/or
cognitive decline for up to a year post
treatment (American Cancer Society at
www.cancer.org, 2011)
Up to 40% of patients with high grade
gliomas are reaching a lifespan of up to 5
yrs post dx. (American Brain Tumor
Association at www.abta.org, 2011)
40% of patients will be eligible for
participation in a clinical trial at some
point during their treatment (City of Hope
at www.cityofhope.org)
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– Potential causes of cancer:
1) Chemical or toxic compound exposures:
Benzene, asbestos, nickel, cadmium, vinyl
chloride, benzidine, tobacco or cigarette
smoke (contains at least 66 known potential
carcinogenic chemicals and toxins), and
aflatoxin
2) Ionizing radiation: Uranium, radon,
ultraviolet rays from sunlight, radiation from
alpha, beta, gamma, and X-ray-emitting
sources (the primary concern in Japan at this
time)
3) Pathogens: Human papillomavirus
(HPV), EBV or Epstein-Barr virus, hepatitis
viruses B and C, Kaposi's sarcoma-associated
herpes virus (KSHV), other bacteria are being
researched as possible agents
4)
Genetics/family history (ACS.com)
www.bibelex.org
Tumor = An abnormal lesion and/or group of cells
that serves no purpose.
Types of tumors:
1)
Primary: Generally begin in the CNS and do not metastasize
2)
Secondary: Start in one area of the body and metastasize to somewhere else.
Most common cancers and where they like to migrate
Primary tumor site
Metastasizes to:
Lung cancer
Brain and bones
Colon
Liver
Prostate
Bones
Breast
Bones, lungs, liver, brain
Head and neck
Lymph nodes in the neck. Spreads
to entire lymph system if
undetected
Leukemia, multiple myloma,
lymphoma: not localized
Cells found in the blood, lymph
nodes, liver, bone. NOT referred to
as metastasis, but as disease
progression. (ACS.com)
Signs and Symptoms
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Chronic headaches
Vision changes/loss
Frequent dizziness
Depression/mood and personality changes
Hearing reduction/loss
Hormonal changes
Changes in sensation (numbness, tingling)
Fatigue
Hormonal changes
Seizures
Movement changes and/or loss
Sensory changes and/or loss
*Associated with the location of the tumor, its
size, and cerebral areas impacted.
Diagnostics: listed in order of occurrence during the continuum of care
Step one: CT scan.
Pros: 1) Can easily diagnosis large
structures in the brain.
2) Cheaper than most other diagnostics
3) Faster than most other tests (usually
30-60 minutes)
Cons: 1) Pictures are still life, 2) Can’t
detect changes in vasculature. 3) Images
are B & W, 4) Not sensitive to subtle
changes in the brain
Step Two: MRI
Pros: 1) Can easily detect abnormalities
in blood flow,, 2) More efficient at
finding tricky margins/edges of tumors.
Cons: 1) Pictures are still-life, 2) More
expensive for hospitals and patients, 3)
time consuming (90 min. +), 4) more
restrictive (e.g. cannot use on patients
with some P&O, pacemakers, shunts,
vagal nerve stimulators, etc.)
Step Three: Function MRI (fMRI)
This image displays the cortical
surface in transparent gray. Within the
brain are shown fMRI activations in
teal, arteries in red, tumor in bright
green, and white matter fiber tracking
in yellow (MIT.edu)
Pros: 1) Shows vacularity VERY clearly, 2) shows not only anatomy, but
also shows MOVEMENT AND FUNCTION, 3) Can reveal “feeder” vessels
and where other cancerous material CAN spread.
Cons: 1) VERY expensive, 2) VERY long (1-2 hours), 3) requires specialty
equipment usually housed at specialty hospitals, 4) Can be rebutted by
insurance companies (argue that a still-life MRI may suffice), 5) Does NOT
reveal what type of cancer is present.
PET Scan (Positron Emission Tomography):
1) NPO x 6-8 hours prior
2) a “tracer” is injected into the bloodstream or
breathed in as a gas
3) The patient waits about an hour for “uptake” of the
tracer
4) The imaging study is performed. Sometimes
patients are asked to read names or letters if
memory/language is being tested.
Test time requires between 1-2 hours.
5) Uses the uptake of glocose to produce an image.
6) Usually used well into the cancer “journey”
fyeahmedlab.tumblr.com
*More active areas show up in warmer colors
(red/yellow/orange). If the brain is burning glucose
more quickly than normal, high/abnormal activity is
suspected.
Pros:
1) Can identify hard-to-find tumor margins
2) Can help determine if a tumor is benign or malignant
3) Helps determine if chemotherapy is/will be effective (by examining the brains ability to absorb
/”uptake” foreign material)
4) Can help discern if multiple cancer types are present
Cons: 1) Some patients have reactions to the tracer itself, 2) results can be skewed with patients who
are diabetic, or on corticosteroids and/or insulin.
The WHO Tumor grading system
GX: Grade cannot be assessed (Undetermined grade)
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G1: Well-differentiated (Low grade)
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G2: Moderately differentiated (Intermediate grade)
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G3: Poorly differentiated (High grade)
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G4: Undifferentiated (High grade)
Grading is based on irregularity of cells as compared to normal cells,
vascularity, and likelihood of spreading.
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This scale is ONLY used for primary tumors.
Secondary tumors and/or tumors from other types of cancers are
graded using the Gleason scale ranging from 2-10 (NCI, 2011)
1.
Note: Tumor grade should NOT be confused with the stage of a cancer. Cancer stage refers to the extent or severity
of the cancer, based on factors such as the location of the primary tumor, tumor size, number of tumors, and lymph
node involvement (NCI)
Examples of what you may see in an
imaging study or oncology report:
Grade II frontal glioma = mildly/moderately vascular
(usually operable) tumor of the glial cells in the frontal
lobe
Grade IV frontopareitel glioblastoma = highly vascular
(often inoperable or able to be only partially resected),
highly malignant , rapidly growing tumor of the glial cells.
Grade III left parietal astrocytoma: moderate/highly vascular
malignant tumor involving the astrocytes in the glial cells
The Underappreciated glial cell
Types and Functions of Glia
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Astrocyte (Astroglia): Star-shaped cells that provide physical and nutritional
support for neurons: 1) clean up brain "debris"; 2) transport nutrients to
neurons; 3) hold neurons in place; 4) digest parts of dead neurons; 5) regulate
content of extracellular space
Microglia: Like astrocytes, microglia digest parts of dead neurons.
Oligodendroglia: Provide the insulation (myelin) to neurons in the central
nervous system.
Satellite Cells: Physical support to neurons in the peripheral nervous system.
Schwann Cells: Provide the insulation (myelin) to neurons in the peripheral
nervous system.
Note: There are an estimated 10-50x more glial cells in the brain as compaired
to the number of neurons. (Neuroscience for kids)
•Abundant in the hippocampus and the cortex
•Most cells in the brain are either neurons or glia
•Neurons can adapt (neuroplasticity); glia historically thought to be unable
(though new research is suggesting it CAN!)
•Glia regulate which messages are sent THROUGH the neurons, and WHEN
•Remarkable research in mice (Scientific American, 2013)
Q: Why is this important?
A: Because the most common types of PRIMARY MALIGNENT tumors
originate in these cells! They are called gliomas.
This picture illustrates the
the relationship between
astrocytes and blood
vessels. The dark 'starlike' figures are the
astrocytes.
Astrocytes provide nourishment to neurons by 1) receiving glucose from capillaries 2) breaking the
glucose down into lactate (the chemical produced during the first step of glucose metabolism) 3)
releasing the lactate into the extra cellular fluid surrounding the
neurons.
http://blustein.tripod.com
The uptake of glucose is a critical function for brain cells, which is why PET scans are so effective
in identifying types of cancers, effectiveness of treatment and the often hard-to-see borders of
malignancy.
What’s in a name?
Remember: tumors are named using the following criteria:
1)
2)
3)
4)
Site of lesion
Vascularity (blood vessels that are “feeding” it)
Potential to infect healthy tissue
Type of cancer cells the tumor contains AND whether or not there are more
than one TYPE of cancer cells in the mass.
Case in point:
1)
You work in outpatient therapy. Your team receives a referral for an evaluation of a
40-something woman who has recently been diagnosed with a L temporal meningioma
(labeled as grade II). She has mild word finding difficulties and complains of STM
loss. She started radiation three weeks ago. You see her for 6/8 visits, but she is
unable to complete her outpatient therapy due to fatigue (she can’t handle tx while
doing radiation).
2)
Eight months later, the same woman appears on your inpatient rehab floor s/p
craniotomy due to a L frontotemporal astrocytoma (stage unspecified). Her
neurosurgeon writes in his report it is a gross/total resection of the tumor. She presents
with markedly increased word finding problems, visual spatial deficits and R hemi.
She is now very disinhibited, aphasic and cusses a lot. She stays on rehab for 3 weeks,
then is discharged to a local day treatment program.
3)
Another year passes, and the same woman is admitted a second time to your rehab
unit, now s/p a bifrontal craniotomy s/p diagnosis of a glioblastoma multiforme. Her
aphasia is worse, initiation is now very poor, and she has significant problems with the
oral phase of swallowing (she just chews and chews and chews….). She is also a new
diabetic.
Huh? What the heck happened?!
* Doctors tried to treat the tumor. It probably didn’t work as well as
they had hoped or the patient couldn’t tolerate treatment.
• She did NOT grow another tumor (though this can
happen in rare cases)
• Rather, as it grew, the tumor changed characteristics/”morphed”
into something different. It also infiltrated another area of the
brain.
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Remember…Those characteristics that change are: vascularity,
infiltration of healthy tissues, and complexity and/or number of
different types of cancer cells.
• Therefore: The NAME of the mass changes as the characteristics
change.
Other Helpful Hints:
•Low grade astocytomas often change into high grade gliomas as they grow.
•The craniotomy site(s) and incision markers are a reflection of where the mass
traveled.
•In late stage gliomas (especially glioblastoma multiformes), cancer cells often
cross hemispheres. This makes them VERY difficult to treat.
•Glioblastomas are ALWAYS STAGE IV.
•Stage IV astrocytomas are essentially the same thing as a gliobastoma.
•Grade IV tumors also have margins that are VERY hard to find. Many of them
even grow tendrils or appendages (think “octopus”).
•Despite the prognosis of stage IV tumors,
many people are living upwards of a year after their
diagnosis due clinical trials and new developments
in cancer research. However, they are eventually
terminal.
Treatment options:
What they are and how the impact treatment
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Chemotherapy
Radiation
Radiosurgery
Traditional
surgery
Bone marrow
transplants
Gene therapy
Hormone therapy
Holistic
approaches
Palliative Care
Understanding the cell cycle:
At each stage of mitosis, there is a built-in “check point.” If cellular structure is incomplete or
incorrect, mitosis cannot occur. Scientists rely heavily on these “checking points” as opportunities to
inhibit cancer cell divisions with various types of medications.
Craniotomy 101
Burr Holes initiating removal
of the skull flap
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The leathery dura mater
Photos: www.brain-surgery.us
Arachnoid mater underneath
The patient is made NPO for appx 12/24 hours except meds
The patient is wheeled to the O.R. and sedation is given
Utensils and hardwear are counted pre-op
Any necessary hair is shaven off
The patients head is clamped into a tripod (of sorts). Pins secure the head into the vice (these
small wounds will heal in 1-2 days).
A line is drawn on the skin to demarcate the incision n the scalp
The scalp is cut open and peeled back as far as need be
The skull is marked to demarcate the size/shape of the bone flap
Burr holes are made with small drills to begin skull flap removal
A bone cutting blade cuts the remainder of the skull flap
Necessary tissue is excised.
The skull flap can either be left off or replaced dependent upon the amt of swelling incurred.
Utensils/hardwear are counted and recounted
Common craniotomy terms:
• Cranitomy: Term used for cutting open the brain to alter
structure or function. Does not usually involve removing
brain tissue.
• Craniectomy: Term used for opening the brain and
removing what was normal brain tissue. (Tumors are NOT
considered part of the normal brain. Therefore, tumor
removal is not considered a craniectomy).
• Partial resection: Removal of part of the
tumor (amount is usually unspecified in the chart
but the patient /family usually knows!)
• Gross/Total Resection: Removal of what the
neurosurgeon believes is the whole tumor.
*While a total resection is great, be careful:
This may NOT mean the patient is cancer free.
Chemo or radiation may need to follow.
Staples s/p this young lady’s second
crani. www.photobucket.com
Most common complications of
undergoing a “crani”:
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Risk of infection of the brain itself
Risk of infection of the skull flap
Swelling (external or internal)
Hydrocephalus (many patients require a shunt if this become
uncontollable. These are known as Ventricular-Peritoneal Shunts or
“VP Shunts”
Development of seizures
Development of diabetes insipidus (from corticosteroids used to
reduced swelling)
Cerebral Hemorrhaging
Stroke
Weakness/paralysis/sensory loss due to focal damage
Swallowing difficulties/aspiration pnuemonia
Falls post-op
1.
Chemotherapy: Medications that either cause total cell death, or interrupt the cell cycle.
Apoptosis: The “suicide gene” in cells that cause normal cell death. This is the mechanism that is often
inhibited with cancer. Apoptosis is inhibited and/or not allowed to occur.
The two types of chemo drugs:
• Cytostatic drugs
Cytotoxic drugs:
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Drugs that lead to cell death
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Antimetabolites: drugs that stop the body from
making enzymes needed for tumor growth. Most
common = Mthotrexate (MTX). Risk: They also
inhibit normal enzyme production, possibly leading
to protein deficiency and/or anemia.
Hormones: Used to block proteins needed for
tumor growth. Most common = tamoxifen (used
primarily in breast CA)
Anti-tumor antibiotics: stops cell growth by
changing the environment around the cell. Most
common = Rapomycin
Mitotic inhibitors: plant based inhibitors of
proteins that cancer cells need to breed. Most
common = Taxol
Alkylating agents: drugs that bond to a malignant
cell’s DNA to prevent reproduction, and/or prevent a
damaged cell from “fixing” itself. Most common =
carboplatin, cysplatin, Temodar
Steroids: Primary purposes is to reduce
inflammation. Inconsistent research states they may
have some impact on tumor cells.However,
effectiveness is well documented in CNS lymphoma
(ABTA,2010)
(sometimes called “targeted therapy”:
Drugs that prevent tumor growth or mitosis
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Angiogenesis = the process by which a tumor
grows a new blood supply to feed itself .
Medications called anti-angiogenesis inhibitors
prevent new blood vessels from growing around a
tumor. Most common = interferon, thalidomide.
Often combined with another form of chemo to
attack the tumor and its blood supply.
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Drugs to prevent tumor resistance: many
tumors can become immune to medications as they
change at the cellular level. These drugs keep the
tumor susceptible to the impact of meds. Most
common = guanine derivatives
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Growth factor inhibitors: Meds that prevent
critical proteins from feeding the tumor. Most
common = Gleevec (ABTA, 2010)
Photograph by James L. Amos
Gloved hands cradle a bright hope in the war against cancer. A researcher at a drug
manufacturing plant in Pennsylvania displays a petri dish of cisplatin, a chemotherapy drug
containing platinum. Cancer cells divide and reproduce at highly abnormal rates. Cisplatin
attacks the cell cycle, killing them and reducing the size of tumors. Chemotherapy is one of the
most successful methods to combat cancer. (natgeo.com)
Methods of Delivery
Traditional methods of delivery:
1) Pill form
2) Intrarteriorly (usually via port in the chest or the upper arm)
3) IV form
4) Intrathecally (directly into the spinal cord – given via a catheter
attached to the port)
5) Topically
More recently developed delivery systems
Intracavitary: Patented by Gliadel Once a tumor is removed/debulked, Gliadel wafers are implanted, and line
the cavity in which the tumor used to sit. (Gliadel.com)
Pros: Highly effective and permanent until saturated medication runs out
and they dissolve. Constant dose of medication in direct contact with
malignant tissue.
Cons: Wafers can sometimes become infected, thereby not suppressing
tumor growth as anticipated, and causing infections and/or abscesses.
Requires a subsequent craniotomy for removal if they become infected.
Dosage cannot be changed once they are implanted.
1) Convection enhanced therapy (CED): one of the newest methods of
delivering chemo. Uses the natural physics of the body (gravity/constant
need to equalize pressure) to circulate/push medications into brain tumor
tissue more naturally. More easily navigates through the blood brain barrier
by “sneaking through” with other fluids. Requires a shunt/port (at least one,
sometimes more) to inject.
Cool fact: Research is being done in attempts to include “tracers” that will
allow them to observe real time movement of the drugs in and around a
tumor. These tracers would be mixed with the drug as it is injected into the
patient’s system (ABTA.com).
The joys of treatment…
Side effect
What’s the cause
What to do about it
Nausea/vomiting
Chemo is most sensitive to tissues
that “turn over” quickly. Mucosa in
the mouth and the GI tract are the
most sensitive in the whole body
(NCI)
Avoid acidic and greasy foods. Stick
to fresh produce if able. Use of antiemetics.
Mouth sores
“Sores” are not really sores at all. It
is the rapid turn over of healthy tissue
that happens too quickly.
Avoid acid and/or salt. Rinse with
cancer mouthwash recipe, use gentle
toothpastes (e.g. Biotene)
Diarrhea
Irritation to the GI tract
Controlled mostly by meds, diet
changes
Anemia
Drop in platelets and/or RBCs
Eat high protein foods (red meat,
liver, eggs), take supplements
Neutropenia/leukopenia
Abnormal drop in WBCs
Take supplements, wash hands
frequently, use air purifiers, take
vitamins. May require reverse
isolation if severe.
Constipation
Sensitivity in the GI tract,
immobility, medications (specifically
potassium, iron). Worsened further
by narcotics for pain
Eat fresh fruits and vegetables (avoid
carrots and bananas in large amts),
use juices (prune, apple…warm
temps often help). Use of stool
softeners. Avoid diuretics.
More joys of treatment…
Insomnia
Some chemo drugs are
given in conjunction with
steroids. Steroids can
make people “jittery.”
Worsened by anxiety.
Take steroids in the
morning, exercise daily,
warm fluids at night (tea),
meditation, massage, warm
baths/showers
Blood clots/bruising
Low RBC, anemia, chemo
meds, concurrent use of
blood thinning agents
Clear the home of clutter to
prevent bumps and/or falls.
If taking injections,
alternate sites.
Seizures
Abnormal
metabolic/chemical
alterations, low sodium,
low potassium, low
dilantin levels
Have dilantin levels
checked routinely. Avoid
excessive noise/bright
pulsing lights (video game
warning). Limited
excessive heat. Avoid
alcohol.
Poor appetite
Caused by any of the
above reasons!
Megace, Marinol, Medical
marijuana, culantro (NOT
cilantro), alfalfa, port wine
Note: Some of your patients will have no side effects at all. Others will have ALL of them.
Graph built from info extracted from NCI, ACS, ABTA, and cookbooks listed in bibliography section!
What’ve labs got to do, got to do with it?
All summaries taken from MedlinePlus.org
BUN and creatanine: elements that indicate kidney
function. Both are proteins and waste products
formed when proteins break down.
Elevated levels usually mean patients are
dehydrated and/or having kidney dysfunction. Plan:
hydrate, avoid diuretics
H & H: Hematocrit and Hemoglobin
Hematocrit: protein the carries O2 to the body
Hemnoglobin: the percentage of volume of whole
blood that consists of red blood cells
Low amounts that usually indicate that the patient is
anemic. Frequently caused by conditions that
destroy RBCs, common in leukemia. Also caused
by vitamin deficiencies in iron, B6 or B12.
WBC: White Blood Cells. The body’s infection
fighters
Elevated levels indicate presence of infection.
Antibiotics and/or steroids may mask infection if it is
present
Sodium: controls the overall amt of fluid in the
body, . Also responsible for acid/base homeostasis.
Too low = hyponutremia, too high = hypernutremia.
Regulated primarily by the hypothalamus and
pituary gland. 45% housed in bone, 55% in plasma
Levels that are too low negatively impact arousal.
Hyponutremia frequently causes confusion, balance
disturbances. Abnormally levels can trigger
seizures. High levels frequently seen in diabetes
insipidus. Can also impact cardiac function
Potassium: assists w/ acid/base homeostasis,
necessary for building muscles, critical for normal
electric activity of the heart
If too low, can cause hypokalemia. In mild cases
can cause subtle confusion, changes in arousal.
Diuretics, laxatives and steroids may contribute.
Hyperkalemia (too much) usually indicative of
kidney failure or severe infection. Common in pts
on dialysis. May need potassium supplements
Dilantin levels: A necessary hormone produced in
the body to help regulate electrical impulses
If low, can trigger seizures. Should be checked
routinely for patients w/ history of seizures
“Chemo brain.” Yes, it’s real.
Definition: Mild to moderate cognitive-linguistic changes that occur either during or
after a chemotherapy regiment. Also known as “chemo fog.”
Includes the following:
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Short term memory loss
Difficulty concentrating
Being unusually disorganized
Difficulty with word finding
Difficulty learning new skills
Difficulty multitasking
7) Fatigue (physical and mental)
8) Short attention span
9) Taking longer than normal to complete routine tasks
10) Trouble with verbal memory (recalling a conversation)
11) Trouble with visual memory (Mayo Clinic, 2009)
Interesting fact: One of very few medical terms that originated and was adopted from
the “outside in.” Now recognized in all medical dictionaries and med schools as a
legitimate side effect of treatment. Recognized initially without any scientific data
and/or definitive diagnostic studies (Mayo, 2009).
•
Nomenclature was coined by breast cancer support groups (actual date
unknown, but emerged sometime post the year 2000).
The study survivors were waiting for:
Title: “Self-reported cognitive impairment in patients with cancer.”
Funded by: The American Society of Clinical Oncology
Published in: Journal of Oncology Practice, 2007
Sample: 595 patients in multiple centers undergoing treatment for solid tumors (locations unspecified).
Treatments included radiation, chemotherapy, or both.
Method: Patients given a rating scale between 0-10. Rated themselves on a) concentration and b) memory
0 = not present / 10 = “as bad as you can imagine”
A score of 7 or more deemed as “severe”
Key terms:
Baseline = before treatment began (T1)
Pt report of being at their worst during treatment (T2)
6 months after treatment ended (T3)
Meaningful Outcomes (“The take home message!”)
1)
2)
3)
Cognitive deficits were less severe in those patients receiving ONLY radiation
Increase in cognitive difficulties was significantly increased between T1 and T2 (13% increase with
those reporting severe deficits)
Cognitive problems persisted even at T3 (down by only 3%). Lingered even after 6 months out
Radiation therapy: How it works
5 purposes of radiation:
Many patients are on medications called
radioenhancers. These drugs make tumors more
1) To shrink a tumor
susceptible to the impact of radiation.
2) To eradicate a tumor
3) For palliative reasons
Radiation is measured in rads (radiation absorbed dose).
4) For prophylaxis
Average dose = appx 200 rads/cycle (computing case.org)
RADIATION IS CUMULATIVE
5) Preferred in pediatrics
Types of radiation therapy:
1)
Conventional radiation: Delivers full dose radiation to the tumor itself and the
margins round it. Most common type of therapy given for primary brain tumors.
Problem = it is NOT selective in what it hits. Normal brain tissue is inevitably
affected. Often given in slow daily doses. Radiation is CUMULATIVE and
desired dose can take several weeks to reach. Beams also disperse easily when
they hit the skin (ABTA, 2010).
2)
Radiosurgery: Frequently used for secondary tumors that have metastasized to
the brain. Generally used on masses that are easily seen, and where the
likelihood of unseen tumor cells is low. (ABTA, 2011).
Prior to radiosurgery: Patients will undergo radiation mapping, be fitted for a
facemask (if the tumor is in the brain) and undergo 1-2 “dry runs” prior to actual
radiation delivery. Often put on steroids, anticonvulsants or both.
Units of Measurement:
•Radiation doses for cancer treatment are measured in a unit called a gray (Gy).
*A Gray = the amount of radiation energy absorbed by 1 kilogram of human tissue. (NCI.com)
* Most cumulative doses are between 20-60 Gys.
Fractionation:
The term used for giving small doses at a time.
For adults, patients range between between 1.8 – 2 Gy fractions per dose. A common schedule
is this dosage given 5 days a week for x number of weeks.
*A common dose for children is between 1.5-1.8 Gy per dose..
*Sometimes two fractions/day are given toward the end of a treatment regiment. This is known
as a “boost” since small tumors at the end of treatment can repopulate more quickly.
*Done to allow healthy cells to heal (tumor cells don’t repair as quickly)
*It allows cancer cells to enter into a different phase of the cell cycle in which they are more
sensitive to treatment. (www.news-medical.net)
What terms are used for radiation measurements?
Radiation is measured in different ways. Measurements used in the United States include the following (the
internationally used equivalent unit of measurement follows in parenthesis):
Rad (radiation absorbed dose) measures the amount of energy actually absorbed by a material, such as human tissue
(Gray=100 rads).
Roentgen is a measure of exposure; it describes the amount of radiation energy, in the form of gamma or x-rays, in the
air.
(Roentgen equivalent man) measures the biological damage of radiation. It takes into account both the amount, or
dose, of radiation and the biological effect of the type of radiation in question. A millirem is one one-thousandth of a
rem (Sievert=100 rems). (www.epa.gov)
Radiation Source
Dose (millirems)
Chest x-ray
10
Mammogram
30
Cosmic rays
31 (annually)
Human body
39 (annually)
Household radon
200 annually
Cross-country airplane flight
5
Legal limits: 5 rems’year (for 18 yr old men),
500 millirem for pregnant women
Diagram compliments of the United States Nuclear Regulatory Commission
@ www.nrc.gov
Tobacco and radiation:
•
It's not from just from burning tobacco, -- it's from inhaling radiation absorbed
by the tobacco plant while it grows in the field.
•
Radioactive materials in the atmosphere adhere to sticky tobacco leaves. The
materials remain on the plant throughout the manufacturing process. The use
of Apatite--a phosphate fertilizer--increases the radiation absorbed by the
tobacco plant.
•
The lead-210 and polonium-210 radiation emitted by the tobacco smoke is
trapped in the lungs of the people exposed to it.
•
Tar from the smoke also builds up in the lungs and enables them to trap the
radiation more efficiently. Over the course of decades of inhaling tobacco
smoke, the smoker's lungs are damaged, and the smoker and folks exposed to
the second-hand smoke -- may develop lung cancer [source:
EPA/www.discovery.org)
Radiation mapping
www.natgeo.com
Three types of radiosurgery:
Pre surgery Mapping: building a specific
facemask for delivery of beams into the
correct are of the brain.
Type 1: Cobalt 60 systems radiation beams.
Most common type = Gamma Knife
201 beams focused into one area of the brain
Type 2: linear accelerator (“lineac”). Can be used for both
conventional radiation delivery or radiosurgery. Beams can be
computerized to meet the exact shape of a tumor
Type 3: Cyclotrons. Nuclear reactors capable of smashing atoms to
release harnessed proton, neutron and helium ion beams
Figure 4.
Concept of Gamma Knife
stereotactic radiosurgery. Multiple
separate small beams of radiation
converge at the tumor target
(aafp.org)
A patient being fitted with a
protective helmet that is screwed
onto his head prior to gamma
knife surgery. This helmet
further directs the beams of
radiation to specific targets in the
brain (minoritynurse.com)
Side Effects of Radiation
Impact during treatment
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Hair loss in the treatment area
Mouth problems
Nausea and vomiting
Sexual changes
Swelling
Trouble swallowing
Urinary and bladder changes
Diarrhea
Weight gain or weight loss (often due to simultaneous need
for steroids)
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Note: Late side effects may first occur 6 or more months after
radiation therapy is over. They vary by the part of your body
that was treated and the dose of radiation you received. Late
side effects may include infertility, joint problems,
lymphedema, mouth problems, and secondary cancer (NCI,
2011)
“Radiation Recall”
• What it is: An inflammatory reaction that
occurs in patients who have received chemo
AFTER radiation (NIH.gov)
• The chemo essentially “reactivates” the
EFFECTS of the radiation (not the radiation
itself).
• May occur days, weeks, months or years
after treatment
• Unknown cause/triggers
76 y/o female s/p infiltrating L
ductal breast cancer s/p radiation.
Received radiation appx 6 months
prior to chemo. The addition of
chemo into her system triggered
this condition
(F1000Research.com)
Radiation dermatitis seen in a case of
head and neck cancer treated with
conventional external beam
radiotherapy. (Indian Journal of Burns
@ ijburns.com)
New Cutting edge options:
Novocure
(www.Novocure.com)
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A noninvasive technology in the clinical trials stage
Referred to as “TTF therapy” TTF = Tumor Treating Fields
An Anti-mitotic treatment that slows or reverses tumor progression
NOT an electrical stim unit!!! No electrical impulses are given
Only side effect reported is minimal skin irritation at the transducer
site..
• All cells are polarized. Novocure tampers with the polarity of the
cells, causing them to actually REPEL each other instead of
ATTRACT each other.
• Used in Glioblastoma in addition to chemo, radiation, surgery, etc.
• Also used in small cell lung cancers.
Photo compliments of Kris Circa, a glioblastoma survivor previously seen at St. Jude Medical
Center (Fullerton) and now receiving her Novocure treatment at UC Irvine. She also receives
Avistatin infusions every other week.
Per her, this is how the system works:
“The Novo is worn 24/7 plugged into a wall socket or battery pack. It's quite a contraption. 4 arrays are place
in specific locations on my head and the transducers emit opposing positive and negative impulses to confuse
cancer cells so they don't develop. I know there is a better scientific explanation, but I though the Cliff Note
version was better here. There's quite a bit of info on-line about it.”
Immunotheraputic Vaccines:
These trigger the body’s immune system to “beef up” the immune system to fight
cancern, or to restart a suppressed system (ACS.org)
• Checkpoint
blockade drugs:
*Cancer cells are smart, and can
sometimes “fool” the immune
system into not attacking them.
*They essentially take advantage
of the immune system’s ability
to discriminate healthy from
non-healthy cells, and it’s
failsafe to NOT attack normal
cells.
• Checkpoint blockade drugs
“take the brakes off” and tell
the immune system to go after
the cancer cells again.
• CTLA-4 and PD1
• Adoptive Cell
Transfer Therapies:
• Done by removing a patients
own cells, re-engineering them
and programming them to
attack cancer and then
reinserting them back into the
patient’s body (ACS.org)
• Highly personalized treatment
• Very expensive and not easily
duplicated
• Still in the clinical trials phase.
Hyperthermia: The impact of heat:
1) Can cause changes at the cellular level and make cancer
cells more sensitive to treatment
2) If high enough, can kill cancer cells completely (ACS)
High Heat:
(aka thermal ablation or local
hyperthermia):
•Uses radio waves, microwaves or
ultrasound waves to “cook” the tumor.
• HIFU – High Intensity Focused
Ultrasound
•Can be external or internal
•Usually used with recurrent tumors or
patients who can’t tolerate sx
•RFA (Radio Frequency Ablation) is
most common
•Side effects = bleeding, blood clots,
pain, tissue damage, blistering
Low Heat:
(aka “regional hyperthermia”
•Usually involves heating a cavity in the body
•Combined with radiation or chemo
•Difficult due to the need to sustain an exact
temperature in a large area.
•Side effect include problems with the heart,
blood vessels and major organs.
•Effective for cancers just below the skin.
•Perfusion: Removing blood, heating it, then
pumping it back in.
•Increasing core body temp to appx 102 using
a special tent, thereby triggering the body to
fight infection (www.Lemmo.com)
www.tecnosan.it
www.oncotherm.com
Many patients with cancer have
lower than normal core
temperatures and cannot activate a
fever. As a result, they have great
difficult activating their immune
systems. This system essentially
does it for them. Increases core
temp to between 102 and 105 for
appx 2 hours at a time. Can be
paired with chemo administration.
Other treatments in the works:
• Stem cell treatment (Peripheral blood, cord
blood/tissue and bone marrow)
• Specialized lasers
• Photodynamic therapies: drugs that are “turned
on” by certain kinds of lights and have chemical
reactions with oxygen in the blood.
• Blood / blood product donations or infusions
(ACS)
The idea that geniuses exist has been around for a long time, but the term has
no definitive meaning or use. Photo Credit: thewritertype.blogspot.com
The Genius
Brain!
www.gettysburgian.com
Close up of surgeons' hands in an
operating room with a beam of light
traveling along fiber optics for
photodynamic therapy. Its source is a laser
beam which is split at two different stages
to create the proper therapeutic
wavelength. A patient is given a
photosensitive drug that is absorbed by
cancer cells. During the surgery, the light
beam is positioned at the tumor site, which
then activates the drug that kills the cancer
cells, thus photodynamic therapy (PDT).
www..wikepedia.org
“Clinical trials show…”
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Food and Drug Administration (FDA) categories for describing the clinical trial of
a drug based on the study's characteristics, such as the objective and number of participants.
There are five phases:
Phase 0: Exploratory study involving very limited human exposure to the drug, with no therapeutic or
diagnostic goals (for example, screening studies, microdose studies).
Phase 1: Studies that are usually conducted with healthy volunteers and that emphasize safety. The goal is
to find out what the drug's most frequent and serious adverse events are and, often, how the drug is
metabolized and excreted.
Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have
a certain disease or condition). For example, participants receiving the drug may be compared with similar
participants receiving a different treatment, usually an inactive substance (called a placebo) or a different
drug. Safety continues to be evaluated, and short-term adverse events are studied.
Phase 3: Studies that gather more information about safety and effectiveness by studying different
populations and different dosages and by using the drug in combination with other drugs.
Phase 4: Studies occurring after FDA has approved a drug for marketing. These including postmarket
requirement and commitment studies that are required of or agreed to by the sponsor. These studies gather
additional information about a drug's safety, efficacy, or optimal use.
(See also Study Phase data element on ClinicalTrials.gov.)
The financial side of things…
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The pharmaceutical business is the second most lucrative business in the U.S.
Oil is the first.
Eleven of the twelve cancer drugs the Food and Drug Administration approved
for fighting cancer in 2012 were priced at more than $100,000 per year, double
the average annual household income, according to a report by the Journal of
National Cancer Institute. (Kantarjian, abcnews.com)
Most insurance companies have an 80/20 or 90/10 payment set up. Out of
pocket costs are generally $10,000/year PER MEDICATION considering the
above costs.
The out of pocket maximum for tax purposes is $6,700/year BEFORE you can
include medications as an itemized deduction.
Many cancer patients have to either decrease their work load or go on long
term disability. Once sick days and short term leaves have been exhausted,
state disability will usually provide patients with appx. 60% of their gross
income.
Most clinical trials are NOT covered by major insurance companies as they are
not yet proven to work. The sponsor of the clinical trial may provide some
compensation, but it is usually a pittance compared to the financial overhead
patients experience.
Common Costs incurred
Immediate costs
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Initial MD appts
Diagnostics used for tumor detection (CT,
MRI, labs, blood tests)
Pre-surgical medications (corticosteriods,
anticonvulsants)
Surgery (if indicated)
Post-op hospital stay
Therapy (inpatient, then outpatient)
Radiation mapping
Radiation treatment
Chemo medications
Follow up visits
Regular lab checks
Consults with other
professionals/supporting MDs
Clinical trials: Most insurance companies
won’t pay for experimental treatment. If
they do, it’s only a small fraction.
Subsequent costs
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Lost wages
Prosthetics and/or orthotics (commonly
knows as P and O)
Travel expenses (gas, food).
Hotel accommodations
Cosmetic needs (e.g. wigs, specialty
make-up)
Reconstructive surgery
Escalating insurance deductibles
Inability to obtain more insurance policies
due to a now pre-existing condition
Cost of caregivers and/or subsequent stays
at other facilities along the continuum of
care
Legal fees for trusts, wills, etc.
Funeral preparatory costs
Discipline-Specific skills sets helpful with this population:
Beyond your textbook scopes of practice!
Physical Therapy
Occupational therapy
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How to read specific MD orders re:
mobility (e.g. HR, BP, etc.)
Knowledge of Prosthetics and orthotics,
and how the cancer patient may tolerate
these.
Heightened awareness of seizures,
triggers, etc.
Special attention to safety – many of these
patients are anemic, “bleeders” and have
very fragile skin.
Wound care: Patients undergoing
chemo/radiation are often susceptible to
open wounds and heal slowly.
“Energy conservation “vs. muscle building
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Awareness of chemotherapy ports/central
lines as they relate to dressing/bathing
Clarifying MD orders for the above: what
to ask for and when.
How to make skin contact (for
bathing/dressing/toileting) with patients
who are on strong chemo (some patients
cannot be touched w/o double gloving due
to chemo chemicals transferring via skin
to skin contact or via bodily fluids)
Proper disposal of bodily waste
Adaptive techniques for medication
delivery (e.g. adaptive techniques for
injections if a pt is a new diabetic with a
new hemi, etc.)
Implications for child care, driving
(reporting to DMV).
Discipline skills sets (con’t)
Speech therapy
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Knowledge of how chemo/radiation effect
the mouth (skin/mucous membranes)
How treatment impacts smell and taste
Knowledge of how medications impact the
swallowing mechanism
Accommodating dietary restrictions into a
dysphagia diet
Knowledge of foods/liquids/textures/
temps to help with oral pain management
Impact of chemo/radiation on dentition
Handling weight loss
Malnutrition/dehydration
Strategies for intake of medications
Knowledge of comfort measure protocols
and waivers for dysphagia diets is patients
who are most likely going to die.
Knowledge of NG, PEGs, TPN
Implications for E-stim, MBS studies, etc.
The basics of how to read a CXR
Recreational Therapy
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Peer support networks
Organizations for helping patients resume
leisure activities on a modified basis
Social networking on the floor
Nontraditional therapy options (w/ MD
clearance) e.g. Thai Chi, music tx, pet
therapy
Helping with computer programs to offer
peer support/resources
Special celebrations (e.g. Christmas
parties, potlucks, etc.)
Knowledge of community organizations
for patients with special needs
Discipline skills sets (con’t)
Nursing
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Special attention to skin care/prevention of
wounds
Knowledge of most common infections
Special considerations with lines, indwelling
ports and how to maintain them
Proper methods of disposing , sharps, meds and
chemotherapy agents
Proper methods of disposing bodily waste
(biohardardous)
When/how to call consults those enlisting
comfort measures (e.g. palliative care, spiritual
care, etc.)
Oral hygiene/hydration/nutrition needs
Difficulties in swallowing
Recognizing subtle changes in medical status
Acute awareness of labs and what they mean
Manners, kindness and compassion
A sense of humor
Thick skin and an iron stomach
Social Work
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Handles most insurance issues
“Catastrophic Case Manager:” - case
managers with specialty training to assist
those patients in which:
a) Length of stays may be long
b) Exorbitant funds /costs are required
c) Insurance companies are proving difficult
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Orchestrate follow up appts
Orchestrate initial round of meds (in
conjunction w/ nursing)
Knowledge of support groups
Methods of financial support (e.g.
scholarships, philanthropic organizations
Everybody should know the basics of:
1) Skin care
2) Swallowing/dysphagia precautions
3) Effects of medications (and NOT just chemo meds!)
4) Heart rate/BP
5) Seizure precautions/what to do if one occurs
6) Mobility restrictions/precautions
7) How to operate restraints
8) Simple strategies to ease pain
9) How to listen to your patient!
10) When to push and when to “call it a day.”
Palliative care: an unsung resource
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Improving the quality of life of patients and families
Palliative care improves the quality of life of patients and families who face lifethreatening illness, by providing pain and symptom relief, spiritual and psychosocial
support to from diagnosis to the end of life and bereavement. Palliative care:
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their
own bereavement;
uses a team approach to address the needs of patients and their families, including
bereavement counseling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are
intended to prolong life, such as chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage distressing clinical complications
(World Health Organization/WHO @ http://www.who.int/cancer/palliative)
The palliative care team provides access
to services such as:
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Massage therapy
Aromatherapy
Acupuncture/acupressure
Pet therapy
Organic/holistic approaches to pain mgmt
Deep breathing techniques
Eastern Medicine (e.g. yoga, Thai Chi, herbal medicines)
Counseling regarding physical/emotional coping
Understanding legal or health care language
Financial resources
Note: While palliative care specialists may not actually PROVIDE these services, they have
the names/contacts of people who do! Most services require an MD order.
More about Palliative Care:
• ANY health care professional can make a referral to the palliative care
team or palliative care nurse
• Referring does NOT require an MD order
• It has been heralded for improving quality of life
• Hospice is under the palliative care umbrella, but it is NOT THE
ONLY SERVICE PALLIATIVE CARE PROVIDES!
• Hospice is used when patients are terminal, usually having less than 6
months to live. It is usually covered by insurance.
• Palliative nurses are generally RN’s. It is a specific type of nursing
requiring specialty training.
• They are some of the coolest, most innovative people you’ll ever meet!
• Often have some quirky, untraditional methods of treating symptoms
and side effects.
• They are direct, generally do not “mince words” and are usually wellseasoned folks who have lots of life experience.
Profile of a
seasoned
nurse:
An amazing
asset to any
team!!!!!
Case Study: Kris Circa
Glioblastoma survivor
Kris’s Story:
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Elementary school teacher for 38 years
30 yrs in 5th grade/ 8 yrs in RSP
Born, educated and grew up in Fullerton (and still lives there!)
Hobbies: she’s a crafty lady! Wood working, tole painting, sewing,
embroidery, scrapbooking, macramé, decoupage.
LOVES to knit – started in childhood and still doing it!
Now makes caps for people suffering from traumatic hair loss (cancer,
brain surgery, injuries, burns, alopecia).
She has made 3395 of them since 2009!!!!!!!!
Very active in an organization called “Knots of Love”
Married x 35 years, no children. Mom is all who remains of her extended
family.
Kris is a breast cancer survivor…TWICE! (1983 and 1996)
Reports having “many wonderful friends though the years” and having
felt “very secure, loved and accepted. “
Diagnosed with GBM of the R temporal lobe in 2012. Currently
undergoing treatment.
Knots of Love
(www.knotsoflove.org)
Knots of love volunteers sorting through the Google caps, as seen through Google Glass.
Knots of love volunteers sorting through the Google caps
Photos/text compliments of The Newport Beach Independent
http://www.newportbeachindy.com/googleserve-week-benefitslocal-charity/
Knots of Love founder, Christine Fabiani
A nurse and veteran going through the bag of caps
Knots of Love founder Christine Fabiani delivered
to a Veteran’s Affairs hospital during last year’s VA
cap drive.
Symptoms and Diagnosis:
in Kris’ words
“My symptoms began subtly. My dad and brother had migraines, so when I got a
headache that lasted 6 weeks, I suspected I was joining the migraine club. On the
Monday after Thanksgiving, 2012, as I was preparing to go to dinner with friends, I
decided to lie down for "just a minute." My husband discovered me lying down, told me
to put on shoes, and insisted we go to the Emergency Dept.
“ From there, my memories get vague. I was admitted to the ICU after an MRI and awoke
there the next afternoon after brain surgery. My husband and mother made the decision
to proceed with the surgery as I was not aware at all. The neurosurgeon told my family
that I had a large (egg-sized) mass in the right side of my brain. As it was glioblastoma,
it was "a matter of life and death" so they gave the go-ahead, for which I am eternally
grateful. “
“The first time I saw the neurosurgeon was the day after the surgery. I have had an
Oncologist for MANY years, so seeing her was not a shock. The surprise came in the
Radiation Oncologist and what she had planned for me. I had 30 days of brain radiation,
complete with "fencing mask", accompanied by oral chemotherapy. I had a re-growth of
the tumor in 2013 but saw all the doctors prior to surgery that time.”
St. Jude
Medical Center,
(SJMC) in
Fullerton, CA,
where Kris
went to
inpatient neuro
rehab post-op
UCI Medical Center; Irvine, CA where Kris had
her craniotomy and still receives treatment
Dr. Noblett, Kris’
neurosurgeon.:
Dr. Nowroozi,
Kris’ physiatrist.
and Medical
Director of
Neuro Rehab at
SJMC
Reaction to the “C” word:
“
Everyone I know cried, pulled up their grown-up pants,
and decided to fight this thing. I have been completely
surrounded by a safety net of love, support, compassion,
meals brought in, folks driving me around, cards, phone
calls, pep talks, and help.
I had breast cancer in 1983 and 1996, so the "C" word was
not too difficult for me, but I was most stunned that it
wasn't metastatic breast cancer, rather a whole new
mountain to climb. The most daunting part has been the
statistics, cure rate (or lack thereof) and possibility of
survival. I know 2 things: miracles happen, and 10 % of
people with this particular cancer survivor more than 5
years AND I intend to be in that group!”
Medical Course:
• “After 7 days of recovery from surgery I was told I
would be going to rehab, which I thought would be with
older folks in diapers passing a beach ball around, or
group sing-alongside. It turned out to be a positive
experience, except that my life had totally left my
control. I was given a daily schedule of physical,
occupational, speech, recreational therapies, none of
which I thought I needed! It turned out
I was wrong and all were very
informative and helpful.”
Treatment and side effects:
• “While in the hospital, I was on anti-seizure medication (can't remember
name) and steroids. When I came home I started Temodar orally, daily, in
conjunction with radiation. That's when by blood (found) took a digger.
They think it was due to suppression of my bone marrow from
Adriamycin, Cytoxin, 5FU therapy for the breast cancer in the 80s. I
received 3 transfusions of platelets and daily Nupagen (sp?) injections to
try to bolster me up. “
• “ St Jude doesn't have a neuro-oncologist so I was referred to UC Irvine
specialists to determine an alternate therapy. It was recommended that I
use NovoCure TTF ( tumor treatment fields) along with Avastin infusions
every other week.”
* Note: The most common seizure meds are Keppra (very expensive and not always covered by
insurance) and Dilantin. Dilantin levels need to be monitored regularly when on this med.. You
also can’t drive while you have a dx of a seizure disorder.
Temodar:
Also known as “temozolamide.” Used to slow cancer growth and/or shrink brain
tumors. Also used w/ bone cancers
Side effects: tiredness, headaches, weakness, SEVERE nausea/vomiting. Can
trigger bone marrow cancer in some patients. Weakens the immune system
(anemia, nutropenia) and may cause changes in clotting (thrombocytopenia).
Dangerous to mucous membranes if chewed or inhaled.
Precautions: Do not eat prior to treatment. Meds can be absorbed through the
skin; Pregnant women shouldn’t touch it. Use soft toothbrushes to prevent gum
bleeding. Avoid contact with sharp objects. Take at the SAME TIME every day.
(www.webmd.com)
Avastin
How it works: Under normal conditions, new blood vessels grow to feed the
tumor and help it grow. Avastin attacks the tumor at the vascular level, and
prevents new vessels from reaching the tumor. This causes the tumor to stop
growing and/or shrink.
Most Common Side effects: Nosebleeds, Headache, High blood pressure,
Inflammation of the nose, Too much protein in the urine, Taste change, Dry
skin, Rectal bleeding, Tear production disorder, Back pain, Inflammation of
the skin. (www.webmd.com)
Kris’ Lingering effects/follow up
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Minor difficulties w/ balance, especially with the battery pack she has to wear on her
back from the Novocure device. (The device actually weighs 8 lbs, but “feels like it
weighs 30!”)
Changes in taste: “ Food used to taste like I was chewing on tin foil – from breast CA
chemo meds.” Metallic taste remains, but now “food doesn’t really taste like anything,
or what it’s supposed to.”
Fluctuating appetite
Mild STM loss
Fatigue
Previously had to have MRI’s every 4 weeks, but has “graduated to every 6 weeks!”
Last crani in 2012: 25% of the tumor was necrotic (either from radiation or temodar).
Residual weakness of her left leg
Has to remove the Novocure every 4 days to shave her head, “alcohol it” to remove
oils. Husband John had to receive special training on how to donn the device. She
wears it 24/7. “Plugs in” at home, but uses the battery pack when out and about.
Still undergoing radiation. Claims “It’s worse than the meds!” Describes it as a scary
experience initially, especially with molds, positioning, etc.
Has returned to driving – 6 months w/o a license and “had to swear a hundred times
over that I wasn’t on anti-seizure meds!”
Biggest stressors and fears:
“Probably the most difficult part(s) we're
losing my driver’s license, fear of seizures,
losing some memories - like playing the piano
- becoming someone "different", falling,
embarrassing myself or my family, not being
able to take care of myself, hubby, or mom,
being a burden. I can drive and am living
fairly normally, but the fears of regrowth,
GBM statistics, incapacitation, and loss of
"me" remain.”
http://margaretrwilson.com/overcoming-fear/
Finding Joy and Hope
• Philosophies on life: “As cancer survivor of 30 years. I
know that each day is a gift and no one is promised tomorrow.
I know that the "small stuff" is not to be grieved over and to
do as much good as I can, as often as I can needs to be my
motto. Each day I attempt to think of something for which I'm
grateful. After several years, I should have quite a list!”
• On comfort: “I'm fairly easy to please, I think! I'm happy
with a Diet Coke with crushed ice, flannel pjs, a comfy chair,
knitting or crocheting, sacred music, the love of family and
friends, gifting caps to strangers going through a traumatic
time. I don't feel that my needs/desires have changed since
before this life-altering event, but (mayhap) my perception is
skewed!”
…On Hope and Purpose:
• “What gives me hope is ongoing research, especially
in genomic and/or vaccines. I try to get through the
toughest days by remembering how far I've come,
that I'm still standing, and that I intend to be in the
10 % of survivors. I'm proudest that I attempted to
get through this travail with dignity and grace, and,
thus far, I think I have (with a few minor
exceptions)!”
Words of wisdom to health care
providers:
“Smile, hold the patient's hand if
it's needed, listen with an open
heart, tell the patient what is
happening -before it happens!,
remember that we're people, not
just a diagnosis or case.”
Building an effective program while counseling your patient:
Favorite quotes from favorite patients.
1)
“Alright kid, let’s get to it…but don’t blow sunshine up my
&*@!”
The importance of honesty (even on a bad day).
2)
“I’m dying. You know it and I know it. What’s the point?”
Making therapy relevant and meaningful.
3)
“Today sucked. Got anything to make me laugh?”
Finding humor in the midst of crisis.
4)
“You know, I do enjoy your company…but am I really making
any progress?”
Creative data collection a format your patient can understand.
5)
“I don’t really remember what we did together, but I know your
face and I know you prayed with me”
Building spiritual support into your sessions.
www.cancerisnotfunny.com
Remission: Treatment is over…Now what do I do?
The Lance Armstrong Foundation “Cancer Survivor Care Plan”
Designed for those in remission or who have “beaten” the disease.
Purposes:
1)
To help ease the transition between the oncology team back to a patient’s PCP.
2)
To help survivors prepare a cohesive document describing their personal cancer treatment from beginning to end.
This linear document can be particularly helpful for patients who may not remember all the pieces of their
treatment
How it works: (watch the video!) Using the program on the Livestrong website, patients input various pieces of
information into a database. Some questions include: age, nationality, social history, diagnosis date, type of CA,
dates of most recent imaging studies, names/#s of members of the patient’s oncology team, where treatment was
done, # of rounds, medications taken, etc. Patients can skip some questions if they choose not to have various
pieces inputted into their final report.
The result: A cohesive report including all the aforementioned information. Written in an H & P format, with most critical
information listed in hierarchical order.
The benefits:
1)
A markedly more seamless transition for the patient as he/she “changes hands.”
2)
Creation of a cohesive reference for caregivers to use if the patient relapses
3)
The finished document provides and independent addendum for the survivor which includes recommended
timelines for follow-up exams, re-checks and general health maintenance. It also provides information regarding
support groups for cancer survivors who may be struggling to return to life as they knew it
4)
It’s free
5)
It can be changed at any time if relapse occurs
The “catch:” The survivor has to:
a) have kept great records relative to the details of their treatment and/or
b) be willing to do some homework if they haven’t
Pediatric Brain Tumors
* Most hospitals where treatment is available
are teaching hospitals, so residents and
fellows may be involved in care.
* Treatment STARTS with surgery
* Biopsy is done afterward
* Chemotherapy is used as a last resort due to
its impact on development
* Radiation is the second line of attack.
Most common types of pediatric tumors
Brain stem tumors (60% of all
pediatric tumors)
• Medulloblastom (PNETS)
are the most common (20%)
• Cerebellar astrocytomas
• Brainstem gliomas
• Ependymomas
*Most of these are benign, but
because of their location,
can still be life threatening.
Hemispheric tumors
•
•
•
•
Supretentorial gliomas
Optic Pathway gliomas
Cranial pharyngeomas
Germ Cell Tumors
*Many of these tumors have
additional side effects
including seizures,
hydrocephalus and growth
issues.
http://www.cbtf.org
Record keeping is key!
Helpful advice to give parents:
Keep track of medical history! Encourage them to keep a log
of the following info:
1) Type of chemo (names of medications, how many
doses)
2) Type of radiations + cumulative # of rads given
3) Immunization history
4) For girls = start dates of menstruation/ regular
periods
5) Development of any new allergies during/after
treatment
If the child will be OUT of the educational setting, be prepared to
provide the following information:
*
An MD order to initiate home study
(Note: home STUDY and home SCHOOLING are not the same thing!)
•
An estimation of how long the student will be out (Shoot for longer ! It’s easier to lift
restrictions and send a child BACK to school than it is to extend an absence and re-do
this whole process!)
•
How many days/week and hours/day you want the child seen by a teacher at home.
•
A potential return date
•
Restrictions the home school teacher may have to follow
•
Criteria for NOT being allowed to see the student (e.g. nutripenia, etc.)
•
Many schools have forms for these services. Ask for the forms…don’t reinvent the
wheel!
•
Start the process early. Delegate a liaison and follow through! Orchestration can take
time, so get a jump on the process!
When the student is ready to
RETURN to school,
include the following
recommendations:
• Neuropsychological testing prior to returning (can be done
as an outpatient)
• A FULL ASSESSMENT by the special education team
(classroom teacher, speech, psych, nursing)
• Preferential treatment to accommodate mobility, visual
and/or auditory deficits. Can also help with medical
monitoring.
• Accommodations for the impact of medication side effects
(e.g. seizure meds can make children drowsy).
• Implementation of a 504 Plan to accommodate sequelea
while special ed testing is being completed.
Further questions to ask the
doctor and include in your report:
• Restrictions for organized sports
• Potential need for an aide, shadow or RN/LVN involvement (e.g.
steroids can trigger diabetes, and most kids don’t know anything about
BGMs if they were healthy prior!)
• Recommendations for school activities (e.g. many children may
experience or be at higher risk for seizures. School dances , concernts,
etc. would be questionable events.
• Recommendations for outside activities including P.E.
(excessive sunlight may interfere with chemo drugs and heat can
sometimes trigger seizures).
• Transportation concerns: Sometimes riding a bus can trigger excess
nausea or noise can be over stimulating
• Computer use as it relates to risk for seizures (e.g. types of games, etc.)
Your school administrators, teachers and RN’s will thank you for this!!!!
What Cancer Cannot do:
Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.
Unknown
*Dedicated in loving memory of Edward H. Peters and Dennis Woolsey
Bibliography
Books
*Ghosh, Kris, Carson, Linda & Cohen, Elyse: Betty Crocker’s Living with Cancer Cookbook. Indianapolis, Indiana: General Mills.
Besser, Jeanne, Ratley, Kristina, Knecht, Sheri, Szafranski, Michele (2009): What To Eat During Cancer Treatment: 100 Great-Tasting,
Family-Friendly Recipes to Help You Cope, American Cancer Society Incorporated.
*Weihofen, Donna L, Robbins, JoAnne & Sullivan, Paula A. (2002). Easy to swallow, Easy to Chew Cookbook. New York: Wiley, John
& Sons, Incorporated
Achilles, Elayne & Levine, Todd (2004): The Dysphagia Cookbook. Nashville, TN: Cumberland House:
*Alan P. Lyss MD, Corrigan, Patricia & Humberto Fagundes M.D: Chemotherapy and Radiation for Dummies
(2005): Indianapolis, Indiana: Wiley House
McKay, Judith: The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment (2009). Oakland, CA: New
Harbinger Incorperated:
Websites
*Lance Armstrong Foundation at www.livestrong.org
*American Cancer Society (ACS) at www.cancer.org
*National Cancer Institute (NCI) at www.cancer.gov/
*Mayo Clinic at www.mayoclinic.com
*American Society of Clinical Oncology (ASCO) at www.asco.org
*City of Hope at cityofhope.org
*American Brain Tumor Association (ABTA) at www.abta.org
*Donnatrussell.com (for “returning the gift” comic)
*MedlinePlus at www.nlm.nih.gov/medlineplus
*World Health Organization @ www.who.int
*Massachusetts Institute of Technology @ www.MIT.edu
Neuroscience for kids @ http://faculty.washington.edu/chudler/neurok.html
*Amnerican Academy of Family Physicians @ www.AAFP.org
*Childrens Brain Tumor Foundation @ www.cbtf.org
*Novocure @ www.novocurettftherapy.com
* Clinical Trials @ www.clinicaltrials.com