Welcome to Penn State Cancer Institute

Transcription

1 Welcome to Penn State Cancer Institute The physicians, nurses and auxiliary staff welcome you to Penn State Cancer Institute. We are here to partner with you on your health care journey. The treatment plan may require additional testing or consultation with other specialists before treatment can begin. We have compiled this patient guide to provide pertinent information and serve as a resource guide during your treatment. Your journey begins with your first appointment with a Cancer Institute physician or admission to Penn State Health Milton S. Hershey Medical Center. Our staff will greet you and gather information needed to register you as a patient. Your primary physician (or attending physician) will coordinate with his or her colleagues to determine the best possible treatment plan for your specific case. The treatment plan may require additional testing before treatment can begin, as well as consultation with other specialists. At the Cancer Institute, we have a multidisciplinary team approach to the care of our patients which means you will be treated by a team of specialists. Our team works together to guide each patient through diagnosis, treatment, and recovery. The multidisciplinary team approach helps to ensure that your treatment plan reflects the combined expertise of many professionals. Your multidisciplinary team members may include a surgeon, medical oncologist, radiation oncologist, radiologist, pathologists, other specialty physicians, and nurses providing various levels of care. We are partners in your care. Even though you may be frightened and unsure about your future, we are here to help. We need to know what is happening in your life so we can make accurate assessments and refine treatments as needed. We encourage questions from you and your family members. Actively participating in your care by reporting symptoms and asking questions can provide you with a sense of control during this potentially overwhelming time. We hope that your experience at the Cancer Institute will exceed your expectations of quality care. We will certainly do our best to partner with you to achieve this. SINCERELY, The entire staff of Penn State Cancer Institute

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3 My Team Members SPECIALTY NAME PHONE NUMBER Medical Oncologist Fellow Nurse Practitioner Physician Assistant Nurse Coordinator Clinical Trials Research Nurse Coordinator Radiation Oncologist Radiation Oncology Nurse Surgical Oncologist Medical Social Worker Clinical Pharmacist Scheduler You may also need to contact other services, including the infusion room, pharmacy, social services and radiology. Using the chart below will help you to get in contact with these services. SPECIALTY NAME PHONE NUMBER

4 Your Health Care Team MEDICAL ONCOLOGIST is a faculty physician who specializes in oncology and/or hematology. Your physician will manage your care and supervise the care you receive from the resident physician and medical students. He/she is responsible for involving other members of your health care team, including consulting physicians, in your treatment plan. FELLOW PHYSICIAN is a doctor who has completed medical school, received his/her medical doctor degree, and is now undertaking intensive training for oncology and hematology specialty. Your fellow physicians will be the doctors who write orders and make decisions related to your care under the direct supervision of your attending physician. CERTIFIED REGISTERED NURSE PRACTITIONER (CRNP OR NP) is a certified advanced practice nurse who is qualified to treat certain medical conditions without the direct supervision of a doctor, performs physical exams and procedures, prescribes and administers medications, interprets laboratory studies and provides treatment. The nurse practitioner works in collaboration with your treating physician. PHYSICIAN S ASSISTANT (PA) is a certified, mid-level medical provider who works under the supervision of a licensed physician and is trained to perform physical exams and many clinical procedures, prescribes and administers medications, interprets laboratory studies and provides treatment. NURSE COORDINATOR is a nurse assigned to work with you, under the direction of a physician, to coordinate your treatment scheduling and help maintain continuity of clinical care. The nurse coordinator also serves as your liaison with the physician. CLINICAL TRIALS RESEARCH NURSE COORDINATOR is a nurse who directs and coordinates patient care during a clinical trial, including teaching patients about what is involved in participation in a clinical trial, instructing on side effects and their management, managing data and serving as a contact person for patients when they have questions. RADIATION ONCOLOGIST is a doctor who specializes in using radiation therapy to treat cancer. A radiation oncologist prescribes the amount of radiation you will receive, plans how your treatment will be given and closely follows you to help manage side effects. RADIATION ONCOLOGY NURSE provides nursing care during radiation therapy, working with all members of your radiation team. A radiation oncology nurse will talk with you about your radiation treatment and help you manage side effects. RADIATION THERAPIST works with you during each radiation therapy session. A radiation therapist positions you for treatment and runs the machines to make sure you get the dose of radiation prescribed by your radiation oncologist. SURGICAL ONCOLOGIST is a physician who specializes in the surgical treatment of cancer. MEDICAL SOCIAL WORKER is a licensed professional who assists with emotional support for you and your loved ones. The social worker also helps with any financial, medical, and prescription issues, as well as arrangements for home care, equipment, infusion services and transportation. CLINICAL PHARMACIST is a member of the health care team who works directly with physicians, other health professionals, and patients to ensure that the medications prescribed for patients contribute to the best possible health outcomes.

5 Social Worker Penn State Cancer Institute offers social work services for both inpatient and outpatient concerns. The Social Worker can help patients and families with the following: Emotional support, counseling and referrals Financial concerns Assistance with applications for financial and/or prescription assistance Lodging and transportation assistance/options Information and referrals to hospice Home care and home infusion arrangements Home equipment needs, including wheel chairs, walkers, and oxygen Referrals to community agencies Information about how to apply for disability Information about local support groups Information about handicap placards Information about notary services Alternatives to home care (i.e., skilled nursing facility, assisted living facility, rehabilitation facility) For most concerns and questions, the best way to contact and communicate with your physician is through the nurse coordinator who works closely with your physician. NURSE COORDINATORS OFFICE HOURS (Medical Oncology) Monday thru Friday: 8:00 a.m. 4:30 p.m. *Calls received after 4:00 p.m. may not be answered until the next business day. For emergency and very serious health-related issues (including fever > 100.4) after normal business hours, on weekends or holidays, please call (select option 4) to be connected to our after-hours nurse triage care line. RADIATION ONCOLOGY If you are experiencing an urgent medical need related to your radiation therapy during normal business hours (8:00 a.m. 4:00 p.m.) please call and follow the prompts for the radiation oncology nurse working with your physician. If you have an urgent medical need after normal business hours, on weekends or holidays, please call and ask for the radiation oncologist on-call. SCHEDULING To reach the Penn State Cancer Institute (toll free), call ; follow the prompts. To schedule a return appointment To cancel an appointment To reschedule a current appointment

6 Department of Pharmacy Chemotherapy and Infusion Therapy HOURS OF OPERATION Monday - Friday Saturday, Sunday, and holidays 7:00 a.m. 6:00 p.m. 7:30 a.m. 4:00 p.m. PHONE NUMBERS: or Located in room T1108 across the hall from Day Infusion Services, the chemotherapy and infusion pharmacy provides high-quality pharmaceutical care for patients being treated at Penn State Cancer Institute, Penn State Health Milton S. Hershey Medical Center. CLINICAL STAFF PHARMACISTS and CERTIFIED PHARMACY TECHNICIANS work closely with your physicians and nurses to make certain that safe orders are being written and prepared for your scheduled treatments. If you are on a research protocol, your physician and research coordinator will remain in close contact with our pharmacists. Prior to each treatment, your current weight and any ordered lab values (e.g. white blood cell count, platelets, kidney and liver function values) are evaluated to ensure the safe administration and dosing of your drug. The nurse reviews any concerns regarding lab values with your physician. The pharmacists are available to answer questions about the drugs you are receiving. They are your drug experts, and can address concerns regarding other medications, drug interactions, side effects, and food-drug interactions. Please do not hesitate to ask your nurse or doctor for a visit from your pharmacist while you are here.

7 Retail Pharmacy Services For your convenience, upon discharge from the hospital, clinic, or infusion area, a retail pharmacy is available to address your at-home medication needs. Conveniently located in room T1100 inside the main entrance of the Medical Center and a short distance from the Cancer Institute entrance, the pharmacy has expanded hours to meet the needs of patients. If you use our pharmacy to fill the prescriptions that you will take at home, your complete drug therapy and profile is available to all Penn State Health providers. This allows your team to monitor for drug-to-drug interactions and further promotes collaboration between care providers. HOURS OF OPERATION Monday - Friday Saturday, Sunday, and holidays 9:00 a.m. 9:00 p.m. 9:00 a.m. 5:30 p.m. PHONE NUMBER: FAX NUMBER: Prescription Assistance Program Staff and Care Coordination (Inpatient) or Outpatient Social Worker For patients with questions or concerns about insurance coverage, how to pay for treatments, or prescription needs, a CARE COORDINATOR or SOCIAL WORKER is available to meet with you to provide information, discuss your options and answer questions. If you have concerns, it is best to address them before starting any treatments. Please ask to speak to a member of your care coordination team (inpatient) or your social worker (outpatient), to determine if there are programs for which you might be eligible. When necessary, the care coordinators and social workers will collaborate with our PRESCRIPTION ASSISTANCE PROGRAM STAFF to facilitate access to medication assistance programs and other funds that may be available to patients who are uninsured or underinsured. PHONE NUMBER: or

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9 Month: SUNDAY MONDAY TUESDAY WEDNESDAY THURSDAY FRIDAY SATURDAY Notes:

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11 Current Home Medications Pharmacy Name: Pharmacy Phone Number: Medication Dose Route Frequency Who Prescribed

12 Medication Dose Route Frequency Who Prescribed Radiation Therapy Medication (if applicable) Medication Dose Route Frequency Who Prescribed

13 GENERAL INFORMATION Bring all prescription medication bottles with you to each doctor s appointment. Also list any over-the-counter medications (vitamins, herbs, etc.). Inform your doctor of any medication allergies. Take your prescription medications as prescribed by your physician. For any questions or concerns about your medication, please contact your doctor or nurse coordinator. Narcotic prescriptions (i.e. morphine) cannot be called or faxed into a pharmacy. You must hand carry the prescription. Please request medication refills from the physician s office that prescribed the medication originally. If you believe that you are having a medication reaction (e.g. rash, extreme fatigue, severe diarrhea, dizziness), please notify the doctor or nurse coordinator right away. Do not wait several days before calling us. Do not wait to request prescription refills when you are down to your last pill. If you are receiving your medications via mail order, it is your (the patient s) responsibility to request the refill according to the directions the mail order company provides when the original order was filled. PRESCRIPTION AUTHORIZATIONS Some medications do require authorization. Depending on the insurance company and your insurance plan, it may take one week or more to receive the authorization. MAIL ORDER PRESCRIPTIONS (if your plan permits) Some prescriptions can be filled at a local pharmacy or (if your plan permits) through mail order. It is the patient s responsibility to register with the mail order company. REFILLS If you are leaving a phone message requesting a refill of your medication, please provide your Name and date of birth Name of medication and dosage FINANCIAL ASSISTANCE If you need financial assistance information, please turn to the Resources section. If you need assistance paying for your medications, please speak to a Social Worker or Care Coordinator. The name of the physician who ordered the medication One month or three month supply preferred Pharmacy name, and phone number It is best to request medication refills during your doctor s visit. When you request a refill via telephone, please allow 48 hours notice. In addition, allow two weeks notice to receive prescriptions from us in the mail.

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15 GENERAL INFORMATION Bring your insurance cards and prescription cards with you to all appointments. Please share any changes with the medical office associate when you check in. It is your responsibility to notify us as soon as possible if your insurance changes or it is cancelled. Read your insurance policy to become familiar with your coverage/benefits. If you have concerns about your health care expenses or coverage, first contact your insurance company to verify your coverage/ benefits. If you need additional assistance, please contact the Penn State Health Patient Financial Services Office at If you are having difficulty paying a Penn State Health bill, please contact the Penn State Health Patient Financial Services Office at and ask to speak with a Financial Counselor. Some insurance companies have Case Managers available to help guide you through the business details of your disease. This allows you to talk with the same person every time you call. The goal is to make sure you, the patient, are getting medically necessary care, quality care, and that the care is being delivered as efficiently and economically as possible. The Case Manager anticipates the patient s future health care needs and works to put into place what is needed to meet those needs as efficiently as possible. You may call your insurance company to ask if a Case Manager is available to you. If you are assigned a Case Manager, this person will serve as your contact person for all of your insurance questions every time you call. FMLA FAMILY AND MEDICAL LEAVE ACT PAPERWORK If you are no longer able to work, need a reduced work schedule or intermittent time off for appointments, or a family member has to take off work to care for you, please call your employer s Human Resources Department to obtain your FMLA paperwork. Once you receive the paperwork, complete all sections that you are required to complete. You should then give this paperwork to the Outpatient Nurse Coordinator that works with your physician. The Outpatient Nurse Coordinator will have days to complete the FMLA paperwork. Once he/she has completed their part, the FMLA paperwork will be sent directly to your employer or given back to you for you to submit to the employer. Please let the Outpatient Nurse Coordinator know how you want the completed paperwork to be handled so you both know who will be responsible to submit the papers. Your employer will then notify you if you are approved or denied the FMLA request. Be sure you understand your employer s FMLA policy and follow the process for calling off if you are taking intermittent time off from work. You may call the FMLA provider/counselor directly with questions. FINANCIAL ASSISTANCE If you need financial assistance information, please turn to the Resources section. If you need assistance paying for your medications, please speak to a Social Worker or Care Coordinator.

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17 Information provided by your nurse or physician specific to your disease can be added to this tab section. Cancer is a general term describing over 100 different diseases. Cancer can form in any tissue of the body. Based on where the cancer begins, in what body organ/tissue, determines its unique characteristics and behavior. However, what all cancer has in common is the uncontrolled growth of abnormal cells; cells that no longer obey the body s rules for self-regulation. Cancer cells also have the ability to spread to other parts of the body (metastasize). Although you may have the same type of cancer (breast, lung, brain, leukemia, etc.) as someone else you know or read about, all of the details related to your cancer may not be the same. Your physician will prescribe a treatment plan that is right for you based on all of the information gathered about YOUR disease from various tests that have been performed. This plan will be outlined for you. Please ask questions so we can help you understand this new information. We want you to partner with us in these decisions. A cancer diagnosis is an emotional time. The information can be overwhelming. Treatments can be short term or extend over a longer period of time. Other people who have been through the experience can perhaps relate to some of your feelings, provide suggestions on how to cope, and how to communicate your feelings and needs to a spouse, partner, children, extended family, friends, and co-workers. Your physician, nurse and social worker are good resources for this information also. Or a support group may be helpful for you (see our list of support groups in this binder). There are reliable Internet resources where you can find trustworthy information about disease, side effects and symptom management, as well as advice on coping with emotions. Caregivers will also find useful information here. If you have questions about something you have read on the Internet, please talk to your physician or nurse. They can help you understand the information and provide guidance related to what you have read. Web Resources NATIONAL CANCER INSTITUTE (NCI): Learn about types of cancer, treatments, coping and facts about cancer CANCER AMERICAN CANCER SOCIETY: Find information on managing your cancer experience, support programs, services, cancer facts, and information for patient, families, friends, caregivers, and survivors

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19 Welcome to Penn State Cancer Institute Medical Oncology The medical oncology team is your partner in care. We hope that your experience here will exceed your expectations. Chemotherapy is the use of medications to treat cancer. Depending on the type of cancer being treated and the stage of the disease, chemotherapy is used to cure the cancer, control the spread or growth of the cancer cells, or ease symptoms of the disease and improve quality of life when cure is no longer the goal. The medications can be given by mouth, by injection, or through an intravenous (IV) catheter. Chemotherapy acts to destroy rapidly dividing cells or to interfere with a critical pathway needed for the cancer cell to survive. Different medications act differently within the body and, therefore can cause a variety of side effects. Although some side effects are common, the presence or intensity of side effects can vary from one person to another. It is important not to compare yourself to another person receiving chemotherapy. If you are experiencing symptoms, or have concerns, please report these to your nurse or physician. An excellent resource for information about chemotherapy and management of common side effects is listed below. This web site links to the National Cancer Institute where you will find additional patient education publications. As you read about the type of cancer you have and about treatments and side effects, please feel free to ask questions of your nurse or physician to learn what pertains to you, what does not, and to clarify any information you are having difficulty understanding. Our goal is to provide you with the information and support needed to get you through this challenging time. Web Resource Additional web resources can be found under the Disease Information Tab. CHEMOTHERAPY AND YOU: SUPPORT FOR PEOPLE WITH CANCER: If you would like a hard copy of this booklet, please ask your nurse. chemo-and-you Your medical oncologist will talk to you about your chemotherapy treatment options. When the treatment regimen has been decided, the physician and/or nurse will give you information about the specific medications you will receive, how these medications will be administered, what monitoring will be necessary (i.e. frequency of labs and scans) and about potential side effects. You will also be given instructions about what symptoms to watch for and when to report symptoms to the nurse/physician. Ways to manage symptoms at home will also be discussed.

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21 Welcome to Penn State Cancer Institute Radiation Oncology CT Simulation and Your First Appointment The radiation oncology team is your partner in care. We hope that your experience here will exceed your expectations. ABOUT RADIATION ONCOLOGY During radiation therapy, high energy X-rays are used to treat cancer by killing the cancer cells or making them unable to grow and divide. In external beam radiation, a machine called a linear accelerator is used to produce a beam of rays that is directed to the tumor or the part of your body that is being treated. Your Radiation Oncology Treatment Team Radiation Oncologists Nurses Radiation Therapists Medical Physicists Medical Dosemitrists Medical Office Assistants Medical Assistant CT simulation is performed in the radiation oncology suite in the Cancer Institute. This is the first step in creating a personalized radiation treatment plan for you. The plan targets the affected area while minimizing the radiation dose to healthy tissues and organs. WHAT TO EXPECT The CT simulation appointment lasts approximately one hour. After checking in at the front desk, you are seated in the front waiting room directly next to the check-in desk. Within a few minutes, a radiation therapist escorts you to the CT simulation waiting area. Here we confirm your name, date of birth, treatment location and pre-treatment weight. We also take a photo of you for your file. This photo is loaded into your radiation record and then displayed each day at the treatment unit where you will verify your information prior to treatment. The radiation therapist positions you on the CT table in a reproducible position. The team will attempt to make you as comfortable as possible, as this will be your position every day for your radiation treatments. During your CT simulation, the radiation therapists create immobilization devices to assist in reproducing your precise body positioning. Depending on your area of treatment, devices may include face or pelvic masks, or a mold formed around the body part of interest. After the scan is complete, you may be given tiny permanent tattoos in the treatment area that look similar to a freckle. The tattoos help to reproduce your exact positioning from the CT scan during each radiation treatment. Please continue to bathe as normal; these marks will not come off. Your radiation treatments begin approximately one to two weeks following your CT scan. This allows the team enough time to create your personalized radiation treatment plan.

22 Block Check/ Dry Run Appointment The Block Check/ Dry Run appointment takes place in the radiation treatment room and occurs after your radiation treatment plan is complete. This appointment allows us to place you in your personalized treatment position using the tattoos that were given to you during your CT simulation. This appointment occurs prior to your first treatment to ensure that we are able to precisely reproduce your set-up on the treatment machine. This appointment lasts approximately minutes. WHAT TO EXPECT Your Block Check appointment lasts approximately minutes. After checking in at the front desk, you are seated in the front waiting room directly next to the check-in desk. A radiation therapist escorts you back to the gowned waiting room. You are instructed on where the patient gowns are located and how to properly change for your treatment. Please note: if wearing two gowns, the first gown covers up the front of your body and is open in the back, and the second gown covers the back of the body and is open in the front (like a robe). From this point, the radiation therapist team escorts you to the treatment console where you verify your name, date of birth, face photo and treatment site. You are taken into the treatment room where you are placed in the same position as you were for the CT Simulation. The radiation therapist aligns you using the tattoos received during the CT Simulation. We ask that you remain as still as possible, as the radiation therapist will be moving you to get you in the exact position for the treatment plan. We appreciate that you would like to help; however, it is easier and faster for the entire team to allow the radiation therapists to move you. After you are in the precise position on the treatment table, the therapist steps out of the room in order to take X-ray images. This enables the radiation therapists and oncologists to ensure that you match the created plan. You may feel the table you are laying upon move; this is normal. We ask that you remain still the entire time you are on the treatment table and breathe normally. Once it has been confirmed that the treatment computer plan is working as intended, the radiation therapist will place a few more marks on your skin with marker. These are intended to aid in your positioning for daily treatment and help speedup the appointments. At this point, the radiation therapist takes digital photographs of the above mentioned marks for documentation to be placed in your treatment record. Clear stickers will be placed over the marks. We ask that you try to keep these marks on. You may bathe as normal; we just ask that you do not scrub or pick at the stickers. Please do not be concerned if the marks do come off; it is not detrimental to you being treated correctly and precisely. When your treatment is completed for the day, you are escorted to the gowned waiting room to change. There is no need to check-out at the front desk after you are dressed. Prior to leaving, you will receive a schedule of upcoming radiation therapy treatment dates and times. Please follow this schedule for your radiation therapy.

23 Daily Treatment The daily treatment appointment is when you receive the radiation therapy as prescribed by your radiation oncologist. The number of treatments and days you receive treatment depends on the treatment area and disease, as well as your radiation oncologist s recommendation based upon your individual treatment plan. WHAT TO EXPECT The daily treatment appointment takes approximately minutes. Each day of your treatment, you begin by checking in at the front desk at the ground floor of the Cancer Institute. You may then proceed to the gowned waiting room where we ask you to change into the gowns as explained during your block check/ dry run appointment. A radiation therapist escorts you back for treatment. Each day, you verify your name, date of birth, face photo and treatment site at the treatment console. At this time, please notify the team of any changes to the treatment area. You then move into the treatment room to be aligned for treatment. Once again, the team will position you using the tattoos. We ask you to remain still and allow the radiation therapists to move you. The team reads measurements and steps out of the room to begin treatment. Depending upon the orders your radiation oncologist provided, the radiation therapists may take X-rays prior to your treatment. This is used as another tool to ensure you are in the correct position. The imaging may or may not be used every day. The treatment begins. The machine may rotate around you, but will not touch you. You are not able to see anything during treatment, but you may hear a buzzing and clicking sound. Please remain still and breathe normally until the radiation therapists come back into the room and state that the treatment is completed. Once a week, you will be seen by a radiation oncologist for an OTV (On Treatment Visit). If you have any concerns in between these visits, please tell the radiation therapist at the machine that you would like to speak to a nurse.

24 Skin Care During Radiation Therapy Skin within the radiation treatment area can become red, sore, and tender during treatment and for several weeks following treatment. Sometimes these skin reactions may seem to progress for a few days after treatment ends. Proper skin care during radiation therapy is essential for healing and comfort. General guidelines are listed below. SKIN PRODUCTS LOTIONS: Only lotions, soaps, cream or deodorants that have been approved by your nurse or physician should be applied to skin in the area being treated. No lotions or creams should be applied for the four hours prior to your treatment each day. When using products, apply products in thin layers or as directed. SUN PROTECTION: Use sunscreen or keep skin in the treatment area protected from the sun with clothing or by avoiding exposure. Skin in the treatment area will always be more sensitive to the sun even when treatment is completed. BATHING: Use a moisturizing soap, such as Dove or Caress. Rinse well to avoid leaving any soap residue on the skin. SHAVING It is preferred that you do not shave the hair in the treatment area. If you must shave, use only electric shavers. Please do not use straight razors. Avoid before or after shave preparations that contain alcohol. TEMPERATURE Avoid extremes of temperature in the treatment area. Avoid jacuzzi/hot tubs, and extremely hot or cold showers. Do not apply ice packs or heating pads to the treatment area. CLOTHING Avoid clothing that might be tight or restrictive in the treatment area. If a mark is left on the skin in the treatment area when you take the clothing off, then it is too tight. Skin should be kept moisturized and open to air, but protected from the sun as much as possible. Areas with skin folds may need to be separated so that the skin is exposed. These areas should be blotted dry as needed to prevent moisture build-up. Skin reactions from radiation treatment generally start to improve two weeks after therapy is complete. Speak to your nurse or physician about any questions or concerns you have related to the skin in your treatment area. Skin reactions from radiation treatment generally start to improve two weeks after therapy is complete. Speak to your nurse or physician about any questions or concerns you have related to the skin in your treatment area.

25 Radiation Therapy Diagnosis: Patient Name: Medical Record Number: Radiation Oncology Nurse: Radiation Oncologist: Start Date of Treatment Area To Be Radiated Frequency of Treatments Duration of Treatments

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27 Welcome to Penn State Cancer Institute Surgical Oncology The surgical oncology team is your partner in care. We hope that your experience here will exceed your expectations. SURGICAL ONCOLOGY TEAM: This team will be responsible to surgically remove the cancer from the diseased area of your body. PLASTIC AND RECONSTRUCTIVE SURGICAL TEAM: The surgical team that will be responsible for the surgical reconstruction, if necessary, to the area of your body affected by the cancer. They will be able to provide you with many options that will aid in your recovery both emotionally, physically and cosmetically. Our plastic surgeons specialize in reconstruction for ALL parts of the body. Do not be shy about seeking a consult to discuss your options. Each specialty will provide you with the specific information related to the type of surgery that will be necessary. It is important that you and your family be involved in the decision making process with your surgical team. The decision process sometimes needs to move faster than you may feel ready. We encourage you to have a support person present with you at your consults/appointments. This can be an overwhelming time and it is important that you understand all the information that is provided. Please take notes, ask questions and review all materials provided to you with your support person once you have had time to process the information. There will be a specialized team of doctors and nurses to care for you and your family throughout your surgical course. They help oversee your care while you recover from surgery. Your clinical staff consists of your surgeon, residents, registered nurses and/or advanced practice nurses/physician assistants. All of them will play a role in your care and be responsible for managing your education, post-operative pain control, managing any wound care needs, providing support and helping with other concerns that may arise during your recovery. PREPARE FOR YOUR PRE-OPERATIVE VISIT. This visit will take place within a month before your surgery. This will be your time to ask additional questions that you and your family/support persons may have of your surgical team and clinical staff. You may also have an appointment with the Anesthesia Clinic. This is where you will discuss your anesthesia options and plan. Please bring an up to date list of all of your medications to your preoperative visit to review with your physicians. During your recovery, it is important to communicate with your surgical team about any concerns. Your concerns may range from pain control to something as simple as to when you can shower after surgery. If you experience any signs of infection or changes to the surgical area in any way that may be of concern to you, please call your surgeon s office immediately. There is a waiting room on the first floor of the hospital where your family/support persons may wait during surgery. Someone will speak to your family/support persons when your surgery is complete. Please make sure you have a driver to take you home upon discharge. Our surgical oncologists, plastic surgeons and the specialized clinical staff look forward to caring for you during this difficult time. We thank you for allowing us to be part of your care and your road to recovery. Clinic offices are open Monday thru Friday 8:00 a.m. 4:30 p.m. Outpatient clinics are closed on Saturday and Sundays. If you need to reach us after hours, or on weekends or holidays, contact the Main Hospital number and ask the operator to page the surgical resident on-call for your specific surgeon. Someone is available 24 hours per day to help you.

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29 Welcome to Penn State Cancer Institute Infusion Therapy Penn State Cancer Institute Infusion Therapy is located in the Cancer Institute adjacent to the main entrance to the Medical Center (Suite T1300). Specially trained and certified nurses who specialize in oncology nursing provide cancer chemotherapy treatments, non-chemotherapy drug administration, blood products, lab draws from central venous catheters, hydration and antibiotics. Infusion Therapy consists of two distinct areas: Infusion Services and Day Infusion (an area utilized primarily by our post-bone marrow transplant patients and hematology patients who need close monitoring after being discharged from the hospital). Outpatient Infusion Therapy - Suite T1300 Hours of Operation Phone Number Monday Friday Patient Check-in Begins at 7:30 a.m Treatment Hours 8:00 a.m. 8:30 p.m Rapid area lab draw appointments only 7:30 a.m. 4:00 p.m. Saturday, Sunday, and Holidays Lab and Treatment Hours 8:00 a.m. 4:30 p.m ** Calls after 6:00 p.m. will go to the answering services** For patients scheduled after 5:00 p.m., please go to the main infusion entrance on the first floor of the Cancer Institute. Certain treatments and therapies require special scheduling. Your appointments will be made in cooperation with your physician and nurse coordinator in order to appropriately carry out your treatment plan. We will do our best to work with your personal schedule as well. All services provided are by appointment only. Questions regarding your schedule should be addressed with your Medical Office Associate ( , Option 4; then Option 2).

30 Blood Work Many of the injections and infusion drugs that we administer require blood work results prior to treatment in order to be administered safely. Your blood work can be drawn on the day of the infusion: On-campus: The Cancer Institute Outpatient Lab, Suite T2350 (for arm draw only) Rapid Infusion Services, with appointment (for port or central line draw only) The University Physician Center Lab Suite 520 (for arm draw only) Or prior to your infusion appointment (must be less than 7 days): On-campus Cancer Institute Outpatient Lab, Suite T2350 (for arm draw only) Rapid Infusion Services, with appointment (for port and central line draws only) The University Physician Center Lab Suite 520 (for arm draw only) At your family doctor, or a local laboratory, with the results faxed to your nurse coordinator or Outpatient Infusion Therapy. Please refer to the table for lab hours of operation. Due to the time required to process blood work and obtain results (anywhere from 30 to 90 minutes for most stat blood work), it is advisable that if possible, labs be completed a day or more prior (no more than a week) to a physician or Outpatient Infusion Therapy visit. To have blood work completed in any other lab outside of the Cancer Institute, you will need to obtain a written order for blood work from your nurse coordinator. Have these lab results faxed to us. Our FAX number will be written on the lab order request. Cancer Institute Outpatient Lab Suite T2350 Monday Friday University Physician Center Lab - Suite 520 Monday Friday Saturday Hours of Operation 7:30 a.m. 3:30 p.m. Hours of Operation 6:00 a.m. 5:45 p.m. 6:00 a.m. 2:00 p.m. ** The Cancer Institute Outpatient Lab and the University Physician Center lab are not open on Sunday or nationally observed holidays.**

31 Process The appointment time given is an arrival time only. The process of a typical infusion appointment has several steps. After check in, many steps are taken to ensure that your visit goes smoothly. Part of this process is awaiting delivery of your drug from our on-site pharmacy (if you require a drug). Most drugs cannot be ordered or prepared until you arrive at Outpatient Infusion Therapy and your blood counts are reviewed and found to be within an acceptable range. Patients visit Outpatient Infusion Therapy for many different reasons, services and lengths of time. You may not be taken back to the infusion area in the order in which you checked in. This is because all of the steps necessary to complete your appointment may progress faster or slower than another patient s depending on the service provided or the drug to be administered. Many of our patients wear a MASK to protect themselves because of lowered resistance to infection. If you have symptoms of a cough or upper respiratory infection, please wear a mask to limit the spread of your germs and protect others. Disposable masks are available at the check-in desk for your use. Please ask the front desk staff. Patient Amenities Our patient rooms are equipped with comforts such as: Glass walls that allow enjoyment of an outside view The Healing Garden During nice weather, patients have access to our healing garden filled with many plants and a walking path. Please speak to your nurse if you are interested in utilizing this area. IN YOUR TREATMENT ROOM Bring with you any blankets, sweaters, books, entertainment and food that you would like. All are allowed in your room. We recommend that you dress in layers to maximize your overall comfort. Shirts with buttons allow for easy access to central lines and ports. V necklines are also suitable. If your labs are drawn from your arm, wear sleeves that can roll up past your elbow. Bring your medications (both pain and other daily medications) that you would normally take during the time that you will be in Outpatient Infusion Therapy. It is best to plan ahead for these needs. Bone Marrow Transplant patients: bring your anti-rejection medications with you so you can take them after your blood level is drawn. Please limit yourself to two guests at any one time in the treatment room for the efficiency and safety of our nurses and patients. Please do not bring small children with you to these appointments. In our Rapid Infusion area (where most labs are drawn, ports are flushed and short duration treatments are given), we ask that family and friends wait for the patient in the waiting room or lobby because the nurses need to maximize the small space in which they have to work. WiFi and televisions with cable A kitchenette in the waiting area (for patient use only) stocked with cold drinks, a microwave, and a boiling hot water tap for tea, instant coffee, and hot chocolate Blankets from a warming cabinet are available to you for comfort

32 FRONT DESK STAFF The front desk staff is available Monday through Friday, 7:30 a.m. 5:00 p.m. and Saturday and Sunday, 8:00 a.m. 4:30 p.m. The phone number is (select Option 4; then Option 2). During normal business hours, a voic may be left for the front desk staff. The Medical Office Associate staff is available to assist you with the following: Check-in/check-out Scheduling and rescheduling appointments Answering general questions Paging your nurse coordinator Obtaining referrals Providing directions Arranging to speak with our social worker Calling your transportation to pick you up Writing absence excuses for school and work Filling out mileage paperwork for financial assistance NOTE: The most efficient way to reach your oncologist during normal business hours is by calling your nurse coordinator. For emergency and very serious health-related issues (including fever > 100.4) after normal business hours, on weekends or holidays, please call (select option 4) to be connected to our after-hours nurse triage care line. Be prepared to give your name, your physician s name, the disease for which you are receiving care and what medical issue you are experiencing (the reason for your call). Depending on the problem you are experiencing, you may be directed to go to the Emergency Room. WHEN TO CALL YOUR ONCOLOGIST Do not let any of the following symptoms go unchecked for more than 24 hours. Prompt attention may be vital. A fever of or higher call immediately Chills with or without fever Extreme fatigue Nausea/vomiting not relieved by home medications Any onset of shortness of breath, chest pain, or increase in these symptoms (call 911 if life-threatening) Unusual bleeding or bruising Development of a rash Severe diarrhea or constipation Feeling of extreme cold Unusual dizziness or heart palpitations

33 Date Weight WBC ANC RBC Hemoglobin Hematocrit Platelets Electrolyte Tacrolimus Other Tumor Marker TRANSFUSION RECORD Packed RBCs Platelets Other Chemotherapy Chart

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35 **Informational handouts provided by your nurse or physician specific to potential side effects of your treatment, and how to manage the side effects, can be added to this tab section.** Side effects can be a distressing and sometimes challenging part of any treatment for cancer. We are here to help you manage any side effects associated with your treatment plan. Your physician and nurse will give you information on which side effects should be reported immediately and which ones can be discussed with your physician or nurse at your next visit. However, if you have concerns about a side effect you are experiencing, or side effects interfere with your ability to eat or drink enough fluids, you should contact your nurse or physician. Information on how to reach your physician or nurse is located in the Treatment Team section. Some titles you may find helpful are: Chemotherapy and You: Support for People with Cancer Radiation Therapy and You: Support for People with Cancer Eating Hints: Before, During and After Cancer Treatment Helpful information can be found in specific booklets from the National Cancer Institute. They are available as hard copy; view on-line, or for download as pdf to your electronic device. The web site is gov/publications or call CANCER ( )

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37 Welcome to Penn State Cancer Institute Inpatient Unit It is our pleasure to provide medical and nursing care to you and your family that meets your individualized needs during your hospital stay. We are also committed to working with you and your care providers to prepare you for discharge and arrange for any post-discharge needs. ROOM ASSIGNMENTS There are 39 dedicated hematology/oncology patient rooms on the seventh floor of the hospital. All rooms are single occupancy with a private bath. Seventh Floor West (7MBW) and 4 rooms on Seventh Floor East (7MBE) are equipped with both telemetry monitoring and positive pressure (HEPA filtration) air handling a requirement for the safe care of our patients with lowered immune function (immunocompromised). You will notice that air will continue to blow from the vents in your room. Please do not place anything over the vent to obstruct the air circulation. Do not use anything to prop open the doors. Covering the vents and propping open the doors will cause the system to alarm. If the circulating air makes you feel cold, please adjust the thermostat in your room for your comfort. The remaining ten rooms on Seventh Floor East (7MBE) are for patients in all stages of disease management. Telemetry monitoring capability is also part of these rooms. Seventh Floor South (7MBS) has ten rooms for nursing care of patients in various phases of their treatment. Telemetry monitoring capability is also part of these rooms. Our goal is to provide the safest care to all of our patients. During your stay, a change to your room assignment may occur to meet your needs or the needs of another patient. We work to minimize this by careful consideration of everyone s needs. NURSING TEAM Our team of specially trained registered nurses provides comprehensive cancer care to patients and their families. The nursing staff works closely with other members of your health care team to plan and deliver care to patients at all stages of treatment. We help to manage any complications or side effect that arise, and provide education for your care at home. We also manage certain specialized treatments, such as peripheral blood stem cell transplant, various phases of clinical trials, palliative care and hospice services. Care to patients with non-cancerous blood disorders is also provided on this unit. The patient care assistant is a valuable member of your nursing team. Under the direction of the registered nurse, the patient care assistant may take your vital signs, such as your blood pressure, pulse, and temperature; assist you with personal hygiene as needed; deliver meal trays; and perform other duties as assigned by the nurse. MEAL TIMES Breakfast is served to patients from 7:30 8:30 a.m., lunch between 11:00 a.m. 12:30 p.m., and dinner between 4:00 5:30 p.m. An attendant from the dietary office will help you complete your menu each day and select nutritious foods based upon your needs and your physician orders. If you need further assistance, please let your nurse or patient care assistant know so they can notify the diet office. Your family may bring you food from home if you choose. A microwave oven and a refrigerator/ freezer to reheat and store your personal food items are available. If there is not a refrigerator in your room, there is one

38 in the South hallway in the Family Nourishment Room. Food must be labeled with your name and the date before it is placed in the refrigerator/freezer. Food will only be stored for three days; after three days, it will be discarded. The Rotunda Café (Main Hospital cafeteria) is located on the first floor off the rotunda. ROTUNDA CAFÉ - MAIN HOSPITAL HOURS OF OPERATION Monday Friday 6:30 a.m. 2:00 a.m. Saturday, Sunday, and Holidays 6:30 a.m. 7:00 p.m. RESTROOMS For patient and visitor safety, we request that family and visitors do not use the patient restroom. Public restrooms are located at the end of the North hallway. INTERNET ACCESS Internet access is available in many areas of the hospital, including the inpatient unit on the seventh floor. We do not have computers for your use, but you may bring your own computer with you. You are fully responsible for the safety of these electronic items. DISCHARGE We realize that no one wants to be in the hospital any longer than necessary. To accomplish the discharge plan, many elements of your care for outside of the hospital must come together, including medication and medical equipment prescriptions, referrals to needed community services, outpatient follow-up appointments, transportation, and written discharge instructions. The medical, nursing and care coordination team strive to arrange your discharge plan as efficiently as possible, but it does take time to coordinate. Our primary concern is your safety. Some needs you might have at discharge are listed below. These do not apply to everyone. LINE CARE AND SUPPLIES If you have a central venous catheter placed during your hospital course and need to go home with it still in place, arrangements will need to be made with a Home Infusion Provider for supplies; and possibly a Home Care Provider for the nursing care necessary to maintain proper functioning of the central line, depending on your insurance coverage. Home Care Nurses (Visiting Nurses) will teach you how to properly take care of your central line. HOME HEALTH SERVICES You may require home nursing care, home physical therapy or occupational therapy, home health aide services or home Social Worker services. MEDICAL EQUIPMENT You may require a walker, a bedside commode, oxygen, or other equipment to ensure your safety and comfort at home. LOCAL LODGING If you live a far distance from the Medical Center, you may need lodging. Hope Lodge, the Parsonage or a local hotel may meet your needs. This can be further discussed with either your Care Coordinator or Social Worker to see what will best fit your needs. LONG TERM ACUTE CARE HOSPITAL (LTACH) When you require continued complex medical care upon discharge, with or without therapy needs, we can arrange for this care at an LTACH. Examples: you need frequent blood transfusion support, IV antibiotics, and/or other therapy.

39 ACUTE REHABILITATION (REHAB) If you are too weak to return home and can tolerate 3+ hours of physical, occupational, or speech therapy a day, this facility can provide these services to help your recovery. They can also manage some medical needs. SKILLED NURSING FACILITY (SNF) If you are too weak to return home and need a slower paced rehabilitation to recover, this facility will provide the best post-hospital care for you. They can also manage some medical needs. OUTPATIENT FOLLOW-UP CARE You may require outpatient follow-up care after your inpatient hospital stay. You may need follow-up at the Outpatient Cancer Center for lab work, transfusion support or radiation treatment. Or you may need appointments with an advanced practice clinician or physician, outpatient physical therapy, or other specialist or services. UNIT LEADERSHIP TEAM The Unit Leadership Team consists of the charge nurse, clinical head nurses, and nurse manager. The assigned charge nurse may change daily, but is always a resource to you and your family should the need arise. The nurse manager or clinical head nurses are also available if the charge nurse is unable to resolve your concern or needs additional support. Please ask to speak to any member of our Unit Leadership Team if you have an issue that cannot be addressed by your bedside nurse. Again, welcome to the Penn State Cancer Institute Inpatient Unit. Please let us know if there is anything we can do to meet your individual needs. You may receive a survey in the mail from the hospital asking about the care you received from us while you were here. If we met your expectations, please take time to complete the survey to share your experience with us. We hope you can score us at the highest Always level of satisfaction. If for some reason we did not meet your expectations, we would like to know so we can make improvements in how we deliver care to our patients and families. If there is a staff member whom you feel has done an exceptional job, please let us know by sharing that with us in the patient survey you get in the mail or you may write a note to one of the Unit Leadership Team members.

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41 Palliative Care WHAT IS PALLIATIVE CARE? Palliative care (pronounced Pal-lee-uh-tiv) specializes in the relief of pain, difficult symptoms, and stress of a serious illness. The goal is to offer patients and their families the best possible quality of life. It is useful at any stage of an illness. Most importantly, it can be provided at the same time as treatment that is meant to cure you. WHAT CAN I EXPECT FROM PALLIATIVE CARE? You can expect to meet a practitioner who will work with you to improve your distressing symptoms. Palliative care helps you carry on with your daily life, and improves your ability to go through medical treatments. It also helps you better understand your condition and choices for medical care. HOW DO I START RECEIVING PALLIATIVE CARE? ASK FOR IT! Start by talking to your doctor or nurse. Ask your doctor for a referral. You may also contact the Palliative Care team yourself at the number listed below. The Palliative care team is available both in the hospital and in the outpatient setting. TO LEARN MORE, VISIT: CONTACT US The Penn State Health Palliative Care Team WHO PROVIDES PALLIATIVE CARE? The Palliative Care team is a trained group of health care providers including physicians, advanced practice clinicians, chaplains, a social worker, nurse and volunteers dedicated to helping you maximize your quality of life throughout the course of your illness. Penn State Health Milton S. Hershey Medical Center Palliative Care 500 University Drive, MC H106 Hershey, PA Phone: Fax:

42 Cancer Genetics Program Since 1998, Penn State Cancer Institute has offered a cancer risk assessment program for individuals concerned about a family or personal history of cancer. The Cancer Genetics Program is led by a board certified genetic counselor/medical geneticist who specializes in the identification and interpretation of key family history as it relates to the risk of cancer. Counseling sessions can help clarify risk for a variety of cancers, including breast, ovarian, colorectal and prostate cancer. FACTORS THAT MAY INCREASE THE RISK OF CANCER While everyone has some risk of developing cancer, the following factors may determine whether a family history poses an additional concern: Multiple relatives with cancers or personal history of cancer, especially when diagnosed at an early age A relative with several different types of cancer (not due to spread or metastasis from the initial cancer site) Ashkenazi (Eastern European) Jewish ancestry A rare cancer in one or more family members A known cancer susceptibility syndrome in the family, such as one of the following: Lynch Syndrome Familial adenomatous polyposis MUTYH-associated polyposis Hereditary breast-ovarian cancer syndrome Li-Fraumeni syndrome Von-Hippel-Lindau syndrome Multiple endocrine neoplasia Type 1 Multiple endocrine neoplasia Type 2 Familial cutaneous malignant melanoma EFFECT OF GENETICS ON CANCER RISK Numerous discoveries have been made through the Human Genome Project regarding the hereditary basis of cancer. These discoveries have the potential to revolutionize medical care as we know it, and have already influenced medical management decisions for some patients. Researchers estimate that about 5 to 10 percent of breast and colorectal cancers may be inherited; whereas up to 15% 24% of ovarian cancer may be inherited. Studies suggest that a greater percentage of prostate cancer may be due to hereditary factors. Some cancers in children may even be due to a genetic predisposition within a family.

43 GET CONNECTED For more information about the Cancer Genetics program at the Penn State Cancer Institute and a variety of cancer-related resources, visit Stay informed through our website with the following resources: new discoveries in clinical cancer genetics links to online resources COVERAGE OF SERVICES The Cancer Genetics program at the Penn State Cancer Institute services are covered by a number of medical insurance plans. To learn if a particular plan will cover the genetics consultation, call our office at For more information or to schedule an appointment at Penn State Health, call or the 24-hour CareLine at book recommendations support resources, including chat groups, message boards, and more information about insurance and employment discrimination concerns clinical research studies and patient registries

44 Support Groups Please contact your nurse coordinator or social worker for additional information. BLADDER CANCER SUPPORT GROUP This group provides an opportunity to share cancerrelated experiences and provide encouragement, hope, education and emotional support to patients with bladder cancer and their families through formal meetings, personal contact and newsletters. This group supports bladder cancer research through awareness functions, seminars and fundraising. For more information, please call the support group liaison at , extension BONE MARROW/STEM CELL TRANSPLANT SUPPORT (BMT) GROUP The BMT Support Group is designed to offer support, encouragement, information and resources regarding all aspects of the stem cell transplant process. The group is open to all Bone Marrow/Stem Cell Transplant patients, family members, caregivers, friends and donors. For more information, please call extension BREAST CANCER SUPPORT GROUPS Two support groups are offered at the Penn State Breast Center. One group focuses on newly diagnosed patients; while the other strives to meet the needs of long-term survivors. Both groups focus on support and educational needs of patients and families whose lives have been touched by breast cancer. For more information, please call CLIMB PROGRAM HELPS CHILDREN COPE This program is periodically offered for children ages 6-11 years old whose parent or grandparent has cancer. Parents meet separately while the children participate in activities designed to facilitate expression of feelings and coping. For more information or to register, call HEAD AND NECK CANCER SUPPORT GROUP This group provides an opportunity for head and neck cancer patients, as well as their family members, to develop connections with and receive support from other patients and caregivers. For more information, call or LEUKEMIA/LYMPHOMA BLOOD CANCER SUPPORT GROUP Offers support and education for patients and family members dealing with blood cancers. The group allows an opportunity for participants to share experiences and enhance coping. For more information, call PROSTATE CANCER SUPPORT GROUP This group helps patients, spouses, family members, and caregivers by providing encouragement, knowledge, and support during a prostate cancer diagnosis and treatment, as well as after treatment. For information, please call THYROID CANCER SUPPORT GROUP The thyroid cancer support group provides individuals a chance to meet people facing similar challenges to yours. ThyCa support groups are free and available to all fighters, survivors and their families, friends and supporters. The local Penn State ThyCa support group is facilitated by Janice Schan, a thyroid cancer survivor. You may contact her by at pennstatehersheythyca@ gmail.com or by telephone at Or, you may simply show up to the monthly meetings. Meetings will be held the third Sunday of every month.

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46 Introduction to Clinical Trials Research and clinical trials have helped to advance the treatment of a number of cancers. Penn State Cancer Institute offers many patients the opportunity to participate in a clinical trial. Clinical trials are highly regulated and undergo review by various committees to ensure the scientific merit of the trial, as well as the protection of human subjects who participate. WHAT IS A CLINICAL TRIAL? Clinical trials are research studies in which people (patients) help doctors find ways to improve health and health care. Many of today s standard treatments for cancer are based on the results of previous clinical trials. Progress made through clinical trials has improved outcomes related to life expectancy and symptom management for cancer patients. The clinical trial will be explained to you in detail before you sign consent to participate. You will be given a copy of the study consent to review. You will have time to ask questions and receive answers to any questions you have. Participation in a clinical trial is strictly voluntary. It is an option for you to consider when you discuss treatment choices with your provider. Your decision to participate or not to participate will not affect the quality of the care you receive. WHAT IS THE PURPOSE OF A CLINICAL TRIAL? A clinical trial investigates new cancer treatments or new ways of delivering existing treatments (i.e. sequence, timing, combination of drugs). Clinical trials examine the effectiveness of a new treatment alone or in comparison to other treatments. A clinical trial may explore a new way of using existing treatment in an effort to find a better way to treat cancer. The new treatment is evaluated to determine if it is better than or no different from the standard or already existing therapy.

47 Your Clinical Trials Team PRINCIPAL INVESTIGATOR, SUB-INVESTIGATOR, TREATING PHYSICIAN: Clinical trials at the Cancer Institute are led by physician-investigators. Sometimes the trials are designed and developed by our physicians, and other times our physicians join a group of doctors throughout the country or throughout the world to allow our institution to offer a certain clinical trial option to our patients. The principal investigator manages the trial at our site. In addition to providing care while you are on the trial, they evaluate the data gained from all study participants. CLINICAL RESEARCH COORDINATOR: The clinical research coordinator directs and coordinates patient care during a clinical trial and is a good contact for patients when they have questions. The clinical research coordinator will teach you about participation in the clinical trial, make sure the research protocol instructions are followed, teach you about side effects, and help manage clinical trial data. They will be in touch with you throughout your participation in the trial to make sure all of your questions are answered. Many other members of your health care team (i.e. nurses, radiation oncologists, pharmacists, etc.) will be involved in your care while you participate in a clinical trial in much the same way they would if you were not in a clinical trial. WHO HAS OVERSIGHT OF THE CLINICAL TRIALS? Physicians, research personnel, non-research related staff, students, and community members serve on the Institutional Review Board (IRB). This diverse group of individuals provides varied expertise and perspective for the process of thorough review of the research submitted to them for approval. They must review and approve all research involving human participants before any study can begin. Members provide continuing review during the study to ensure that the research is conducted ethically and in compliance with all applicable regulations. The IRB also ensures that every person enrolled in a research study is participating voluntarily and has made an informed decision. MORE INFORMATION Please ask any member of your health care team if you would like to be referred to someone for more information about clinical trials offered at the Cancer Institute. You may also request the booklet published by The National Cancer Institute entitled Taking Part in Cancer Treatment Research Studies.

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49 Glossary ABSOLUTE NEUTROPHIL COUNT (ANC): A blood cell count that measures the number of neutrophils in the blood. Neutrophils are a type of white blood cell that fights against infection. Many cancer therapies temporarily lower the number of neutrophils in the blood. ADJUVANT THERAPY: Additional drug therapy or other treatment designed to enhance the effectiveness of the primary treatment. ALOPECIA: Loss of hair. Can affect all body hair, not just the head. ANAPHYLAXIS: Acute allergic reaction (shortness of breath, rash, wheezing, low blood pressure). ANEMIA: A decreased number of red blood cells causing a decreased ability of the blood to carry oxygen to the tissues and organs. If severe, anemia can cause a pale complexion, weakness, fatigue, fainting, and shortness of breath. ANTIBIOTIC: A medication used to fight bacterial infections. ANTI-EMETIC: A medication used to control nausea and vomiting. BIOPSY: Removal of tissue for examination under a microscope for the purpose of making a diagnosis. BIOTHERAPY: A treatment that uses substances obtained or made from living organisms to stimulate or restore the ability of the immune (defense) system to fight infection and disease. These substances may occur naturally in the body or may be made in the laboratory. Also called biological response modifier therapy, biological therapy, and BRM therapy. BONE MARROW BIOPSY: A diagnostic procedure used to remove a sample of bone marrow from the center of the bone for examination under the microscope. COMPLETE BLOOD COUNT (CBC): A laboratory test that determines the number of white blood cells, red blood cells and platelets present in the patient s body. CENTRAL VENOUS CATHETER: A small flexible plastic tube inserted into the large vein above the heart through which medications and blood products can be given. Blood samples may be withdrawn from this catheter also. Examples of other names for central venous catheters are: Broviac catheter, Central Line, PICC, Hickman, Hohn, tunneled catheter, non-tunneled catheter. CHEMOTHERAPY: Specific medications used to kill cancer cells. Most act to injure the DNA of the cell which interferes with the cancer cell s ability to grow and survive. CLINICAL TRIAL: A study that uses new treatments to care for patients. During clinical trials, information is collected about new treatments, their risks and how well they do or do not work. If clinical trials show that the new treatment is better than the treatment currently being used, the new treatment may become the standard treatment. DERMATITIS: A skin rash. EDEMA: Abnormal accumulation of fluid, e.g. pulmonary edema refers to a build-up of fluid in the lungs. ELECTROLYTE: Minerals found in the blood, such as sodium and potassium that must be maintained within a certain range to prevent organ malfunction. EMESIS: Vomit. HEMATOCRIT: The percentage of the blood made up of red blood cells. HEMOGLOBIN: The part of red blood cells that carries oxygen to tissues. HYPERTENSION: High blood pressure. CATHETER: A small flexible plastic tube inserted into a part of the body to administer or remove fluids.

50 IMMUNOCOMPROMISED: A condition, caused by disease or medications, in which the immune system is not functioning normally resulting in an increased risk for infection INFORMED CONSENT: Process by which a patient receives a written explanation of the risks and benefits related to a medical or surgical treatment, or medical treatment involving research. An opportunity to ask questions should be provided to ensure understanding of the planned procedure/therapy prior to signing the consent form. A person must be at least 18 years of age to provide informed consent. Persons less than 18 years of age must have a parent or guardian participate in providing informed consent. INTRAVENOUS: Through a vein. JAUNDICE: A yellowish discoloration of the skin, body tissues and fluids caused by an increased level of bilirubin in the blood stream. LYMPH NODES: Small, oval-shaped glands distributed throughout the body that contain the vast majority of lymphocytes. These glands house lymphocytes and filter microorganisms and other particles from lymph. The nodes are an important part of the body s mechanism to fight infection. MEDIPORT (PORT): A central venous catheter device implanted during a surgical procedure under the skin in the chest area. The catheter is inserted into a large blood vessel. Access by a special needle allows administration of medicines and fluids, as well as blood samples to be drawn. It can remain in place for several months. METASTASIS: The spread of cancer cells from the original site of disease to other areas of the body. MIDLINE CATHETER: a peripheral catheter, usually placed in the upper arm, for the administration of several types of medications and fluids, as well as drawing blood samples. It can remain in place for up to 30 days. MORBIDITY: Sickness, side effects and symptoms of a treatment or disease. MUCOSITIS: Inflammation of the lining of the mouth, the throat, and the gastrointestinal tract. Mouth sores. Sometimes also used to describe inflammation of the genital or urinary tracts. NADIR: Lowest point; usually used in reference to the decrease in blood counts resulting from chemotherapy. NEUTROPENIA: A decrease below normal of the number of neutrophils, a type of white blood cell. A neutrophil count of less than 1,000 increases your risk for infection. You must be careful to avoid sources of infection. NEUTROPHIL: The most common type of white blood cell in the blood stream. It fights bacterial infections. Also called segmented neutrophils or segs. NODULE: A small group of cells; a small solid mass. NPO: Nothing to eat or drink by mouth. PALLIATIVE: Therapy that provides relief from and control of symptoms related to disease or treatment. PERIPHERAL NEUROPATHY: Injury to the nerves that supply sensation to the arms and legs, hands and feet. PETECHIAE: Small areas of bleeding that appear on the skin. They look like dark red or purple spots. This can be due to low platelet counts. PHLEBITIS: Inflammation of a vein. PLATELET: A blood cell that assists in blood clotting. Also called thrombocyte. Patients are at risk to bleed excessively from surgery, injury or trauma if the platelet count is less than 50,000. An increased risk of spontaneous bleeding occurs with platelet counts less than 20,000. PLATELET COUNT: The number of platelets in a blood sample. PROGNOSIS: The predicted or likely outcome PROPHYLAXIS: A medicine or treatment given to prevent anticipated complications. PROTOCOL: A plan of medical care or treatment. RADIATION THERAPY: Treatment aimed at destroying cancer cells, shrinking tumors or suppressing the immune system by using high-energy radiation from x-ray machines or other sources. RED BLOOD CELL (RBC): Cells that pick-up oxygen from the lungs and transport it to tissues throughout the body. A decrease in red blood cells may cause shortness of breath and fatigue.

51 SEPSIS: A serious condition in which your body is fighting a severe infection. It can be caused by a number of different microorganisms, including bacteria, viruses, and fungi. STOMATITIS: Mouth sores (also called mucositis). TOTAL PARENTERAL NUTRITION (TPN): An IV solution with a high nutritional content given through a central venous catheter instead of food by mouth. THROMBOCYTE: Platelets or cells needed for the blood to clot. (See Platelet) THROMBOCYTOPENIA: An abnormally low number of platelets. If your platelet count gets too low, bleeding may occur spontaneously or be difficult to control. TUMOR: An uncontrolled, abnormal growth or mass of tissue that results when cells divide more than they should or do not die when they should. The growth of cells serves no functional purpose. It may be either benign (not cancerous) or malignant (cancerous). TUMOR BURDEN: The size of the tumor or number of abnormal cells in the organ or tissue; or extent of disease overall, including disease that has spread from its original site. WHITE BLOOD CELL (WBC): A type of blood cell that helps the body fight infection and disease. These cells begin their development in the bone marrow and then travel to other parts of the body. White blood cells also play a role in inflammation and allergic reactions. XEROSTOMIA: Dryness of the mouth caused by malfunctioning salivary glands as a result of some cancer therapies.

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