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 kbuchanan 1@bak. rr. com
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) • • 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: • • • 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) • • – 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 • • • 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 (f. MRI) This image displays the cortical surface in transparent gray. Within the brain are shown f. MRI 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) • G 1: Well-differentiated (Low grade) • G 2: Moderately differentiated (Intermediate grade) • G 3: Poorly differentiated (High grade) • G 4: Undifferentiated (High grade) Grading is based on irregularity of cells as compared to normal cells, vascularity, and likelihood of spreading. * 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 • • • 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 an estimated 10 -50 x 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 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…. ). 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. • 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 • • • Chemotherapy Understanding the cell cycle: Radiation Radiosurgery Traditional surgery Bone marrow transplants Gene therapy Hormone therapy Holistic approaches Palliative Care 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 Photos: www. brain-surgery. us Burr Holes initiating removal The leathery dura mater Arachnoid mater underneath of the skull flap 1) 2) 3) 4) 5) 6) 7) 8) 9) 10) 11) 12) 13) 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 cran www. photobucket. com
Most common complications of undergoing a “crani”: • • • 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: Drugs that lead to cell death · 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 • • • · 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. · 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 · 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 Medline. Plus. 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 O 2 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, B 6 or B 12. 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: • • • 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 (T 1) Pt report of being at their worst during treatment (T 2) 6 months after treatment ended (T 3) 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 T 1 and T 2 (13% increase with those reporting severe deficits) Cognitive problems persisted even at T 3 (down by only 3%). Lingered even after 6 months out
Radiation therapy: How it works 5 purposes of radiation: 1) To shrink a tumor 2) To eradicate a tumor 3) For palliative reasons 4) For prophylaxis 5) Preferred in pediatrics Many patients are on medications called radioenhancers. These drugs make tumors more susceptible to the impact of radiation. Radiation is measured in rads (radiation absorbed dose). Average dose = appx 200 rads/cycle (computing case. org) RADIATION IS CUMULATIVE 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 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-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 • • • 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) • 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 (F 1000 Research. 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) • • • 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 PD 1 • 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…” • 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 Clinical. Trials. gov. )
The financial side of things… • • • 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 • • • • 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 • • • Lost wages Prosthetics and/or orthotics (commonly knows as P and O) Travel expenses (gas, food). Hotel accommodations Cosmetic needs (e. g. wigs, specialty makeup) 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 • • 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 • • • 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 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 • 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 • • 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 • • • • 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 • • 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 • • 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 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 otherapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand manage distressing clinical complications (World Health Organization/WHO @ http: //www. who. int/cancer/palliative)
The palliative care team provides access to services such as: • • • 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: • • • Elementary school teacher for 38 years 30 yrs in 5 th 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 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, 5 FU therapy for the breast cancer in the 80 s. 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 Novo. Cure 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 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 • • • 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, Jo. Anne & 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 Mc. Kay, 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) *Medline. Plus 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
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