CANCERCARE CONNECT BOOKLET SERIES. Kidney Cancer.

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1 CANCERCARE CONNECT BOOKLET SERIES Treatment Update Kidney Cancer

2 The CancerCare Connect Booklet Series offers up-to-date, easy-to-read information on the latest treatments, managing side effects and coping with cancer. To order free copies of this booklet, please use the online order form on our website, Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. CancerCare relies on the generosity of supporters to provide our services completely free of charge to anyone facing a cancer diagnosis. If you have found this resource helpful and wish to donate, please do so online at You may also mail a check, payable to CancerCare, to CancerCare, Attn: Donations, 275 Seventh Avenue, New York, NY Thank you. CancerCare National Office 275 Seventh Avenue New York, NY Toll-free HOPE (4673) Phone Fax info@cancercare.org Web The content of this booklet is independent, non-promotional and free of commercial influence and bias.

3 Treatment Update Kidney Cancer Table of Contents Introduction 2 How the Kidneys Work 3 Stages of Kidney Cancer 4 Surgery 5 Immunotherapy 6 Targeted Treatments 7 Chemotherapy 12 Managing Treatment Side Effects 13 The Importance of Clinical Trials 17 The Importance of Treatment Summaries 18 Communicating with Your Health Care Team 19 CancerCare s Free Services and Programs 22 Frequently Asked Questions 23 Resources 25 Editor Eric Jonasch, MD Associate Professor of Medicine, Department of Genitourinary Medical Oncology; Director, VHL Clinical Center, The University of Texas MD Anderson Cancer Center 2016 CancerCare. All rights reserved. 2/16 All people depicted in the photographs in this booklet are models, used for illustrative purposes only. CANCERCARE CONNECT Treatment Update: kidney cancer 1

4 Each year, nearly 65,000 people in the United States are diagnosed with kidney cancer. This type of cancer accounts for about 3 percent of adult cancers. Kidney cancer is more common in men than in women and usually affects people between the ages of 50 and 70. Kidney cancer tends to be silent, causing no symptoms until it has spread beyond the kidneys. The most common symptoms are blood in the urine, pain or pressure in the side or back, and a lump in the side or back. There are several different types of kidney cancer. Renal cell carcinoma makes up about 85% of kidney cancers. This cancer develops within the kidney s microscopic filtering systems, the lining of tiny tubes leading to the bladder. The most common type is called clear cell renal carcinoma, comprising around two thirds of all renal cell carcinomas. Papillary and chromophobe renal cell carcinomas are less common variants. Transitional cell carcinoma, also called urothelial carcinoma, accounts for 10 percent to 15 percent of kidney cancers and begins in the area of the kidney where urine collects before moving to the bladder. Over the past 10 years, researchers have made a number of important discoveries about how kidney tumors develop. For example, researchers have found changes in the genes that promote the growth of kidney cancer. These findings have led to the development of new types of medications for treating kidney cancer. 2

5 How the Kidneys Work The two kidneys, which are each about the size of a fist, are located on each side of the spine, in the back of the body. The kidneys serve as the body s filtration system. Each day, they remove excess salts and other substances from the roughly 200 quarts of blood that pass through them. In the process, the kidneys produce about two quarts of urine a day, which carry waste out of the body. The kidneys also produce hormones that perform many functions, such as regulating blood pressure and stimulating red blood cell production. Each kidney works independently. People can live with only one kidney. If both kidneys fail to work, a dialysis machine can be used to filter the blood. CANCERCARE CONNECT Treatment Update: kidney cancer 3

6 Stages of Kidney Cancer The stage of kidney cancer is based on the size of the tumor and whether it has spread to other parts of the body. Knowing the stage of the cancer helps determine the course of treatment. Kidney cancer is divided into four stages: Stage I The tumor is small (less than 7 centimeters, about 2¾ inches) and has not spread beyond the kidney. Stage II The tumor is larger than 7 centimeters and has not spread beyond the kidney. Stage III The tumor has either: Begun to grow out of the kidney, into the surrounding fat tissue, or Spread to nearby lymph nodes, or Spread to the major blood vessels of the kidney. Stage IV The tumor has grown into surrounding organs, or it has spread extensively to other areas of the body, such as the lungs, bone, or brain. 4

7 Surgery Surgery is the primary treatment for kidney cancer that has not spread. Depending on the stage and location of the cancer, as well as other factors, surgery may remove the tumor or tumors along with some of the surrounding kidney tissue (known as a partial nephrectomy), or the entire kidney (known as a radical nephrectomy). The adrenal gland (the small gland that sits on top of each kidney) and fatty tissue around the kidney may be removed as well. A technique that surgeons are now using more often is called a laparoscopy. In this technique, the surgeon makes several small incisions in the abdomen to insert a tiny light, a camera, and instruments used to view and remove the tumor. This type of surgery has been shown to be just as effective as traditional surgery, with an easier recovery. CANCERCARE CONNECT Treatment Update: kidney cancer 5

8 If the cancer has spread (metastasized) and formed tumors in other parts of the body, the original tumor in the kidney is often still treated with surgery. Two large studies of metastatic kidney cancer have shown that people whose tumors are removed live longer than those whose tumors are not removed. Immunotherapy In immunotherapy treatment, medications are used to increase the body s natural ability to fight cancer. Two such drugs interleukin-2 (Proleukin) and interferon alfa (Intron A, Roferon-A) can cause some kidney tumor metastases (tumors in other parts of the body) to shrink by more than half. However, this type of immunotherapy works in only 10 percent to 15 percent of patients. 6

9 Still, in about 5 percent of people with kidney cancer, interleukin-2 can lead to a long-term remission of metastatic cancer. (A remission is when signs and symptoms of cancer have disappeared.) In some cases, the tumors even disappear and people have lived more than 20 years after their cancer diagnosis. Researchers have yet to find a way to identify those patients most likely to benefit from interleukin-2 treatment. In November 2015, the U.S. Food and Drug Administration (FDA) approved the immunotherapy drug nivolumab (Opdivo) to treat patients whose metastatic kidney cancer progressed while on an anti-angiogenic therapy (treatments designed to starve tumors). Nivolumab is a monoclonal antibody that neutralizes the PD-1 protein, an element of tumors that allows them to evade the immune system. Nivolumab appears to result in major shrinkage in about one quarter of people who receive this drug. Targeted Treatments Targeted agents focus on specific molecules and cell mechanisms thought to be important for cancer cell survival and growth. Some of these drugs block the ability of tumor cells to grow. Other drugs disrupt the flow of blood to cancer cells, which the cells need in order to survive. Research has shown that, in general, targeted drugs increase the length of time that the cancer is stopped from growing. Seven targeted treatments have been approved by the FDA for people with metastatic kidney cancer. Five of these drugs are designed to stop angiogenesis (the process of making new blood vessels). Because a tumor needs the nutrients delivered by blood vessels to grow and spread, the goal of anti-angiogenesis treatments is to starve the tumor. CANCERCARE CONNECT Treatment Update: kidney cancer 7

10 The five anti-angiogenesis targeted treatments are: sunitinib, pazopanib, sorafenib, axitinib, and bevacizumab. Sunitinib (Sutent). Sunitinib was approved by the FDA in 2006 for metastatic kidney cancer. Sunitinib is a pill; it is taken once a day for four weeks, followed by a two-week break, or for two weeks followed by a one-week break. The cycle is repeated for as long as the doctor continues prescribing sunitinib. In clinical trials comparing sunitinib with the immunotherapy interferon, sunitinib was shown to stop the growth of metastatic kidney tumors for twice as long as interferon. Because it is so effective, sunitinib is often used as a first treatment for metastatic kidney cancer. Sunitinib, as well as other targeted treatments, takes advantage of what researchers have learned about how kidney tumors grow. Much like normal tissues, tumors need to have a blood supply, supplied by vessels. Blood vessels grow in several ways; one way is through the presence of proteins called vascular endothelial growth factor (VEGF) and platelet-derived growth factor (PDGF). These proteins stimulate blood vessels to grow into tumors. When tumor cells spread through the body, they release VEGF and PDGF to create new blood vessels. These blood vessels supply oxygen, minerals, and other nutrients to feed the tumor. Sunitinib works by stopping VEGF and PDGF from stimulating the growth of new blood vessels in tumors. Because healthy tissues have an established blood supply, they are less affected by the medication. Researchers also have shown that sunitinib can shrink kidney cancer metastases in many people who have 8

11 already tried other treatments that did not work. In one study, sunitinib was given to people who had first been treated with immunotherapy. Within about two months of taking sunitinib, the tumors in more than 40 percent of these people had shrunk significantly. Tumors also shrank in another 25 percent of these people, though not as significantly. This response lasted for at least a year. The side effects of sunitinib include fatigue, mouth pain, calluses on the hands and feet, diarrhea, high blood pressure, and decreased thyroid function. Pazopanib (Votrient). Pazopanib was approved by the FDA in 2009 for metastatic kidney cancer. This medication, which comes in pill form and is taken once a day, interferes with the growth of new blood vessels needed by solid tumors to grow and survive. In a clinical trial with 435 patients taking part, the length of time before the tumor began growing again averaged 9.2 months for people who received pazopanib, compared with 4.2 months for those who did not receive the drug. In an 1,110 patient study comparing pazopanib to sunitinib, pazopanib was found to be equally effective in patients with metastatic kidney cancer not previously treated with anti-cancer therapy. Side effects of pazopanib include diarrhea, high blood pressure, nausea, vomiting, fatigue, and decreased thyroid function. Because pazopanib can also cause liver irritation, regular blood tests for liver function should be performed. If not caught early, liver problems can become serious. CANCERCARE CONNECT Treatment Update: kidney cancer 9

12 Sorafenib (Nexavar). Sorafenib was approved by the FDA in December It is taken in pill form, usually twice a day. Sorafenib has been shown to shrink metastatic kidney tumors in many people for whom other treatments were not effective. In a study of more than 900 people with kidney cancer, sorafenib caused some shrinkage of kidney tumors in about 80 percent of patients. In addition, it was effective in slowing tumor growth. Common side effects of the medication include calluses on the hands and feet, diarrhea, high blood pressure, loss of taste, fatigue, and decreased thyroid function. At the current time, sorafenib is most frequently used in patients with metastatic kidney cancer who were previously treated with other anticancer therapies. Axitinib (Inlyta). In 2012, the FDA approved the use of axitinib for metastatic kidney cancer in people for whom other medications stopped working. Axitinib is a pill that patients take twice a day. The safety and effectiveness of axitinib were studied in a clinical trial of more than 700 people whose kidney cancer had grown during or after a previous treatment. This clinical trial was designed to measure the length of time it took for kidney cancer metastases to begin growing again during and after treatment with axitinib, compared with sorafenib. In those taking axitinib, it took nearly seven months for the cancer to begin growing again. That s compared with nearly five months for those taking sorafenib. Among the most common side effects of axitinib are diarrhea, high blood pressure, fatigue, calluses forming on the hands and feet, hoarse voice, and decreased thyroid function. Researchers caution that people with high blood pressure should have it well controlled before taking axitinib. 10

13 Bevacizumab (Avastin). In 2009, the FDA approved the use of bevacizumab in metastatic kidney cancer when used with interferon. Bevacizumab (which is also prescribed for colon, lung, and brain cancers) works by preventing the growth of new blood vessels that feed tumors. Interferon stimulates the body s immune system to fight cancer. Studies showed that the combination of bevacizumab and interferon increased the amount of time it takes for the cancer to start growing again by about five months compared with taking interferon alone. In people taking these two medications together, the tumor size decreased by 30 percent compared with 12 percent in people taking interferon alone. However, studies also showed that people taking these two drugs were more likely to have side effects, including a slight increased risk of bleeding, high blood pressure, fatigue, and loss of the body s vital proteins through the urine. Bevacizumab is given intravenously. Interferon is given as an injection, usually in the thigh or abdomen. Two of the seven targeted treatments work by blocking the actions of mtor, a protein that acts like a master switch, turning on different mechanisms in cells that promote cancer growth. Temsirolimus (Torisel). In 2007, the FDA approved temsirolimus for the treatment of metastatic kidney cancer. In clinical trials, people treated with temsirolimus, and those with higher risk metastatic kidney cancer, were shown to live longer than those treated with interferon. Temsirolimus is given intravenously (in a vein). The side effects of temsirolimus include rash, mouth sores, fatigue, breathing problems, increased risk for infection, diarrhea, high blood sugar, high cholesterol, and sometimes low blood cell counts. CANCERCARE CONNECT Treatment Update: kidney cancer 11

14 Everolimus (Afinitor). Everolimus in given in pill form. A clinical trial showed that after taking everolimus for advanced kidney cancer, it was nearly five months before the tumors began to grow again. Side effects include rash, mouth sores, fatigue, breathing problems, increased risk for infection, diarrhea, high blood sugar, high cholesterol, and sometimes low blood cell counts. Targeted treatments are being used in clinical trials and in combination with other types of cancer treatment. New treatments are being developed and researched all the time. In January 2016, the FDA granted priority review status to the targeted treatment cabozanitib as a treatment for advanced kidney cancer that progressed after one prior treatment. Chemotherapy Chemotherapy is not a standard treatment for kidney cancer, as cancer cells are usually resistant to chemotherapy drugs. Some drugs, such as vinblastine, floxuridine, 5-fluorouracil (5-FU), capecitabine, and gemcitabine have been shown to help a small percentage of patients. Chemotherapy is often used only after targeted therapy and/or immunotherapy has already been tried. 12

15 Managing Treatment Side Effects All cancer treatments can cause side effects. It s important that you report any side effects you experience to your health care team so they can help you manage them. Report them right away don t wait for your next appointment. Doing so will improve your quality of life and allow you to stick with your treatment plan. Managing Digestive Tract Symptoms Nausea and vomiting Avoid food with strong odors, as well as overly sweet, greasy, fried, or highly seasoned food. Eat meals cold or at room temperature, which often makes food more easily tolerated. Nibble on dry crackers or toast. These bland foods are easy on the stomach. Having something in your stomach when you take medication may help ease nausea. Diarrhea Drink plenty of water. Ask your doctor about using drinks such as Gatorade which provide electrolytes as well as liquid. Electrolytes are body salts that must stay in balance for cells to work properly. Over-the-counter medicines such as loperamide (Imodium A-D and others) and prescription drugs are available for diarrhea but should be used only if necessary. If the diarrhea is bad enough that you need medicine, discuss it with your doctor or nurse. Avoid sweetened foods and alcohol. CANCERCARE CONNECT Treatment Update: kidney cancer 13

16 Choose fiber-dense foods such as whole grains, fruits and vegetables, all of which help form stools. Managing loss of appetite Because it s important to maintain your weight, eat small meals throughout the day. That s an easy way to take in more calories and protein. To keep from feeling full early, avoid liquids with meals or take only small sips (unless you need liquids to help swallow). Drink most of your liquids between meals. Be as physically active as you can. Sometimes, taking a short walk an hour or so before meals can help you feel hungry. Keep high-calorie, high-protein snacks on hand such as hard-boiled eggs, peanut butter, cheese, ice cream, granola bars, liquid nutritional supplements, puddings, nuts, canned tuna, or trail mix. Eat your favorite foods any time of the day. For example, if you like breakfast foods, eat them for dinner. Managing Fatigue Fatigue (extreme tiredness not helped by sleep) is one of the most common side effects of many cancer treatments. If you are taking a medication, your doctor may lower the dose of the drug, as long as it does not make the treatment less effective. If you are experiencing fatigue, talk to your doctor about whether taking a smaller dose is right for you. There are a number of other tips for reducing fatigue: Take several short naps or breaks. Take short walks or do some light exercise, if possible. Try easier or shorter versions of the activities you enjoy. 14

17 Ask your family or friends to help you with tasks you find difficult or tiring. Save your energy for things you find most important. Fatigue can be a symptom of other illnesses, such as diabetes, thyroid problems, heart disease, rheumatoid arthritis, and depression. So be sure to ask your doctor if he or she thinks any of these conditions may be contributing to your fatigue. Also, it could be very valuable to talk to an oncology social worker or oncology nurse. These professionals can also help you manage fatigue. They can work with you to manage any emotional or practical concerns that may be causing symptoms and help you find ways to cope. CANCERCARE CONNECT Treatment Update: kidney cancer 15

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19 The Importance of Clinical Trials Clinical trials are the standard by which we measure the worth of new treatments and their effect on the quality of life as patients go through those treatments. For this reason, doctors and researchers urge people with cancer to take part in clinical trials. Your doctor can guide you in making a decision about whether a clinical trial is right for you. Here are a few things you should know: Often, people who take part in clinical trials gain access to (and may be the first to benefit from) new treatments. Before you participate in a clinical trial, you will be fully informed about the possible risks and benefits. Some studies show that patients get higher quality care simply by taking part in a clinical trial, because most trials require that doctors and nurses watch patients extremely carefully, and this extra attention may be beneficial. You can choose to stop taking part in a clinical trial at any time for any reason you are always in control of your voluntary participation. CANCERCARE CONNECT Treatment Update: kidney cancer 17

20 The Importance of Treatment Summaries A treatment summary, sometimes called a shadow chart, is a document you create and which remains in your possession. Maintaining your own records allows you and your family members instant access to the specifics of your diagnosis and treatment. A treatment summary should include: Your name and date of birth. Date of diagnosis. Name, affiliation, and contact information of the doctor who gave the diagnosis. Prescribed therapy/therapies; including dates started and stopped, and dosages when appropriate. Dates and types of post-diagnosis testing, and the results. Other medication and supplements you are taking. Names, affiliations, and contact information of all members of your health care team. Talk to your doctor or a member of your health care team about your intention to create a treatment summary, and ask them what else they suggest be included. Take your treatment summary with you when you visit any doctor, not just your oncologist. 18

21 Communicating with Your Health Care Team As you manage your kidney cancer, it s important to remember that you are a consumer of health care. The best way to make decisions about health care is to educate yourself about your diagnosis and get to know the members of your health care team, including doctors, nurses, dieticians, social workers and patient navigators. In addition to creating a treatment summary, here are some tips for improving communication with your health care team: Start a health care journal. Having a health care journal or notebook will allow you to keep all of your health information in one place. You may want to write down the names and contact information of the members of your health care team, as well as any questions for your doctor. Keep a diary of your daily experiences with symptoms related to your illness or treatment. You can separate your journal or notebook into different sections to help keep it organized. Prepare a list of questions. Before your next medical appointment, write down your questions and concerns. Because your doctor may have limited time, you should ask your most important questions first, and be as specific and brief as possible. Bring someone with you to your appointments. Even if you have a journal and a prepared list of questions or concerns, it s always helpful to have support when you go to your appointments. The person who accompanies you can serve as a second set of ears. He or she may also CANCERCARE CONNECT Treatment Update: kidney cancer 19

22 think of questions to ask your doctor or remember details about your symptoms or treatment that you may have forgotten. Write down your doctor s answers. Taking notes will help you remember your doctor s responses, advice, and instructions. If you cannot write down the answers, ask the person who accompanies you to do that for you. If you have a mobile device, ask if you can use it to take notes. Writing notes will help you review the information later. Record your visit if your doctor allows it. Recording the conversation with your doctor gives you a chance to hear specific information again or share it with family members or friends. Incorporate other health care professionals into your team. Your oncologist and oncology nurse are essential members of your health care team, but there are other health care professionals who can help you manage your care: Your primary care physician should be kept updated about your kidney cancer treatment and any test results. Your local pharmacist is a great source of knowledge about the medications you are taking; have all of your prescriptions filled at the same pharmacy to avoid the possibility of harmful drug interactions. Make sure your oncologist knows of any other medical conditions you have, or any pain you are experiencing, so that they can consult with your primary care physician or your specialist if needed. Remember, there is no such thing as over-communication. Your health care team wants to know about how you re feeling overall, which includes your level of pain, your energy level, your appetite, and your mood and spirits. 20

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24 CancerCare s Free Support Services and Programs Receiving a diagnosis of kidney cancer can be very difficult, and adjusting to the necessary changes in your life can be challenging. CancerCare can help. We are a national nonprofit organization providing free, professional services to anyone affected by cancer. Our licensed oncology social workers can provide support and education, help in navigating the complicated health care system, and provide information on support groups and other resources. For more information, please visit us on the web at or call HOPE (4673). You will likely also build your own personal support network, comprised of family and friends. In doing so, it s best to take some time to think about the people in your life and how they are best suited to help. Match the task to their strengths ask a family member who loves to shop to pick up something for you at the store; ask a friend who s a good listener to come over for a chat. 22

25 Q. A. More about kidney cancer Frequently Asked Questions What s the difference between kidney disease and kidney cancer? Kidney disease (also called renal failure) is a breakdown of kidney function, in which the kidney ceases to be able to adequately perform its functions. In kidney cancer, there is a presence of a tumor or tumors. Q. A. Does kidney cancer run in families? There is recent research that indicates there might be a genetic component in kidney cancer. If you have multiple family members with kidney cancer, and you have also been diagnosed, talk to your doctor about the possibility of meeting with a genetic counselor. It s important to note that there are risk factors for kidney cancer not related to heredity, including smoking, obesity, and high blood pressure. These are modifiable by lifestyle changes. Q. A. What questions should I ask my doctor before I start my kidney cancer treatment? Work with your doctor to define the goals of treatment and discuss what you may expect during your treatment. Questions you may want to ask include: How can I best stay on my treatment plan? How does the drug work, and what side effects can I expect? CANCERCARE CONNECT Treatment Update: kidney cancer 23

26 What will be my schedule of visits? What other medications will I need to take? Q. A. I m concerned about dehydration. What can I do to avoid it? The drugs that are used to treat cancer can make you feel dehydrated. Keeping a water bottle with you is one easy way to help you stay well-hydrated. Be sure to stop drinking fluids early enough in the evening so that your sleep is not disrupted. Q. A. My treatment has caused mouth sores. What can I do about them? Talk to your doctor; he or she may want to temporarily reduce your dosage, or even suspend treatment for a short time. Your doctor may also recommend over-the-counter treatments such as rinsing with baking soda or salt water, or magic mouthwash, a term given to a solution to treat mouth sores. Magic mouthwash usually contains at least three of these ingredients: an antibiotic, an antihistamine or local anesthetic, an antifungal, a corticosteroid, and/or an antacid. Q. I have tried all of the existing FDA-approved drugs for kidney cancer. Are there any newer drugs that I can try? A. Talk to your doctor about enrolling in a clinical trial. Your doctor will be able to tell you about clinical trial requirements and about specific kidney cancer trials that are available. The availability of clinical trials can also be found at a service of the U.S. National Institutes of Health. 24

27 Resources CancerCare HOPE (4673) American Cancer Society Cancer.Net Cancer Support Community Kidney Cancer Canada kidneycancercanada.org Kidney Cancer Association National Cancer Institute National Coalition for Cancer Survivorship Partnership for Prescription Assistance To Find Out About Clinical Trials Coalition of Cancer Cooperative Groups National Cancer Institute This booklet has been made possible by Bristol-Myers Squibb. CANCERCARE CONNECT Treatment Update: kidney cancer 25

28 for Help and Hope, visit or call: HOPE (4673)