 Linda Pyle and I are going to talk about nursing management, symptom management, and we'd like to initially thank the KCA and the organizers for the opportunity to provide this symposium session. So I'm Laura Wood. I'm a clinical research coordinator at the Cleveland Clinic Cancer Center working primarily with kidney cancer. And I'm Linda Pyle. I'm a research nurse at the Royal Morrison Hospital in London and I'm predominantly working in kidney cancer with research patients. Thank you. We could have our slides. Thank you very much. So we thought that this would be a good opportunity for us to talk about how nursing can impact and improve patient outcomes. And as we've heard from a lot of the other presenters today, no matter what therapy you're going to initiate, no matter what subsequent therapy the patient's going to get, one of the most important things is to give that patient the best opportunity to have a good clinical outcome. And so a lot of that is what Linda and I are going to try to focus on in providing nurse education and patient education. So as far as the role of the nurse in the United States, there are a variety of nursing roles. We have nine members on the kidney cancer nursing advisory board and we've done some work to try to increase educational information on the website. The kidney cancer association website will talk about a little bit, but if you've not had much experience in it, please explore it. The nursing advisory board's done some work to try to provide easy access to information only for healthcare providers, but for patients and their families. In the U.S., the nursing role is to help with access to medications. So that may be not only the cancer therapy, that may be the supportive care strategies that we're going to be recommending along with a physician. Reimbursement is an issue, it doesn't matter whether you're in the U.S. or abroad, the process is different, but ultimately the goal is to get the patient the drug as soon as possible. There are many patients in our population who have disease-related symptoms and so it's important for us to intervene and assist with managing both disease-related symptoms as well as those from therapy. There are patients that Dr. Rainey or Dr. Garcia and I see and one of my comments to them is we need to get palliative med involved now to maximize control of disease-related symptoms or in spite of all my expertise, we're not going to get them through the cancer therapy. One of the primary things we always emphasize is early and ongoing communication. If I'm talking to a patient and a spouse, I'll talk initially to the patient and I'll look at the spouse and I'll say and if you think he should be calling and he isn't, you've got my number. So we really involve the family with the emphasis on it takes a team to get through therapy. As many of the presenters already today have mentioned, there is a learning curve and Linda and I have had a lot of experience with these drugs through the clinical trial process as well as many years of oncology prior to that and we know there is a learning curve as we try to get familiar and comfortable with these medications. Nursing management I think one of the most important things is education prior to initiating therapy. So whether they're going to get their medication from the pharmacy in our cancer center or two weeks later from a mail order pharmacy, a specialty pharmacy, they need to know what to do and how to manage that therapy. Written information and resources and there are often times when I will provide the same information to the adult child who does not live with the patient because they're also a very valuable resource. One of the things that Linda and I have done is to try to really help educate nurses and healthcare professionals on the class effects because it may be nurses or advanced practitioners that are answering the phones and we need to know what those class effects are for a given therapy to make sure that we're doing the correct telephone assessment and asking the right questions based on the type of therapy that the individual is getting. And is always a proactive approach to not only education but to assessment and intervention for side effects. And again, and I'll repeat it often when I'm talking with a patient and family, early and ongoing communication. Don't wait till Friday afternoon. My goal is to keep you working active on therapy, out of the emergency room and out of the hospital. And so we know that there are opportunities to intervene and provide that information. One of our treatment management strategies is making sure that we get that education with patients. There's nursing literature that documents that they only hear and retain about 50% at best of the information you provide them. So one of the things that we do at our institution is we have patient education folders that are already prepared. The majority of patients I see are on clinical trials but as these drugs got FDA approved, we recognize that those individuals that are not on clinical trials also need that same information. So we have folders down in the physician work room that contain a variety of educational information sheets. Who to contact, what the contact information is, as well as calendars and diary sheets and side effect management sheets. So I'll show you a few of those as well. We also need to make sure we're aware of those side effects that we may be able to prevent or that we can minimize the severity and the dose limiting potential of those and make sure those are some of the key things that the patient and family member know up front. During treatment, follow-up phone calls, early and ongoing assessment and intervention, identify those individuals that need to be seen more frequently. So we saw a patient this past week, about two weeks ago, got palliative med involved. This is a patient on a clinical trial who needs aggressive therapy, aggressive disease symptom management. So even though the clinical trial required the patient to be here once every three weeks, which for the majority of patients would be wonderful, my comment in discussing it with Dr. Rini was we're going to need to see this patient on a weekly basis. So the patient initiated therapy, we had a phone call the next day, we had a phone call the following day, we had a pre-planned clinical visit for one week after he started therapy, at which time we had a pal med consult. Next week when the patient comes back, we're going to have a nutrition consult. So we have the privilege at our institution to get these additional resources involved for the patient, but that is going to be our best opportunity to try to keep this patient on-dose on schedule. Promoting adherence is another key challenge with our therapies and it's not just the anti-cancer therapy, it's the supportive care strategies. I think one of the physicians earlier today talked about adherence with a thyroid medication. And we have had a very similar situation where the patient's symptoms were worse, but it wasn't because he wasn't staying on therapy, it's because he'd stopped taking his synthrate or his levothyroxine. So keeping track of the supportive care strategies as well is very important. And there's a lot of information about that and we have information sheets in our folders about adherence and about persistence so that they know that whatever we can do to help them maintain therapy is really a very important part of the overall treatment plan. Ways to increase adherence is to provide a calendar or diary sheet. Many of these therapies require ongoing home blood pressure monitoring. And so we provide those resources to the patient and give them specific examples of when we're to be notified for blood pressure. It's not if your blood pressure is high call. For you, if your blood pressure, and we'll show them what their typical pre-treatment blood pressures are, if your blood pressure is the systolic or the top number is above 150 or the bottom number, the diastolic is above 85, the first time that occurs, we need to hear about it. Then at least we're knowing early that there's the potential for hypertension or additional management. Are there drugs that need to be restricted as far as dosing and food intake? So that's one of the key things that I try to make sure gets across the very first time we see the patient. Can you assist me and advance my slide, please? Thank you. We do have some resources for pill boxes except for a finitor, which is important component of education that the patient and the family member knows that that drug needs to be left in the foil packaging until the time of dosing. For some of our older patients, it may be a family member that puts all their pills in a dispenser for the week. Therefore, we need to make sure that both the patient and the family member know for a finitor it can't be taken out until the time of dosing. And ongoing during follow-up visits and telephone calls, ongoing reinforcement of the importance and the benefits of adherence. This is one of the diary sheets that we provide to patients. Again, as Dr. Renie mentioned earlier today, whether the patient's on protocol or not, if they're on a VEGF inhibitor, we're asking them to take their blood pressure on a daily basis. One of the key things in education is to tell them how to take their blood pressure. Sitting feet flat on the floor, relax for five minutes, then take your blood pressure. If it's higher than normal, wait a few minutes, take a second reading. Record that one or two assessments. The other key thing you'll notice on this diary sheet for SUTENT is in the fifth row, which is the start of the two-week break, it is written ideally, very clearly, stop SUTENT. I also highlight that because if they miss a dose somewhere along the way or we interrupt their therapy, they're going to go ahead and extend it. So the key education piece is that you stop whether you completed all your doses or not. And ideally there's communication with the healthcare team in regards to that as well. But these are some of the diary sheets that we use. On the left, you'll see the pazopinib diary sheet. Again, one of the things that we educate patients is don't get up, get out of bed and take your blood pressure. We want you up active if you're on a morning anti-hypertensive, take the anti-hypertensive and sometime in the mid-afternoon, prior to your SUTENT or pazopinib dose, we want you to take your blood pressure. If they're on exit nib, again, we typically will have them take their blood pressure once a day in the afternoon or early evening prior to the evening exit nib dose. We also on the right have a separate blood pressure sheet. If our patients have a local primary care physician or a cardiologist that's working with them, they may have additional requests to monitor blood pressure more frequently than we have on their drug dosing diary sheet. So we'll give them a separate blood pressure monitoring diary sheet. And there are patients who will fax these to us if they have changes if they're still working, they can fax them to us, I can review them with their physician and make recommendations if needed. So as far as side effect management goes, written information, the contact sheet of who they can call, who they call and how do they contact someone after hours. There may be 15 side effect information sheets in here. I'm only going to go over the top four or five because those are the ones that I want to make sure they understand how to use and how to have access to. And again, if it's an elder patient, I may provide one or two copies for their family members. Phone call following initiation of therapy, review dosing, what are their early side effects, what questions do they have, having the additional information sheets if they call on another day and they're having problems, we can talk about dietary management and diarrhea, what are the other resources that are available and again, determine if they need to be seen more frequently during the first or subsequent cycles. This is just a generic side effect diary sheet that we give to patients. If there's nothing going on, they don't need to document anything, but this makes a wonderful telephone triage tool so that the patient can call me and say I've been having ongoing issues with nausea. Tell me what you've been doing, when does the nausea occur? Are they on any kind of acid reducer or other medications? What other supportive care strategies can we do that may help their symptoms or their side effects? They bring these sheets then to clinic to allow the physician or the advanced practitioner to see them as well. Many of our side effects include hand foot syndrome, calluses depending on what the therapies are and we'll talk whether it's at the first visit or subsequent visits about controlling the calluses, comforting their feet with cushions, giving good supportive shoes and what kinds of creams or amoleans they may find to be of benefit. So there's information available to help them with those side effects as well so that the next time they come into clinic, they're not in a wheelchair wearing bedroom slippers and I'm going, I have a phone. So we really want to know things up front because those are those those limiting side effects that you really can have a significant impact on minimizing. We've done a lot of work to try to identify supportive strategies that may assist with the management of side effects. Many patients will fluctuate between constipation and diarrhea, they're on pain medication, so one of the dietary things that we have found and there is some information in the literature is on psyllium and using psyllium as a supplement with meals to help bulk up and prevent that dumping syndrome type diarrhea that occurs. We print these in color because for us there's another product, metamucil makes another one in a green label that has calcium in it. So this allows the patient to understand the instructions and which one they're getting because again, this is something that will typically come up on a phone call two or three weeks after the initiation of treatment, I can say go to your folder and pull out a sheet on metamucil and we can talk about that. Preparation H. So there are prescription products that provide topical anesthetics, many of our insurance companies feel that that's supportive and they don't cover it. Preparation H, as you can see from the active ingredients listed, very easy to access. If patients have hemorrhage or already have this product at home, we tell them make sure you're getting a separate tube and mark that tube for your hands and feet with a Sharpie so that they are distinguishing which ones for the rectum and which one is for their hands and feet. But this is another easy to access product that our patients may find to be very helpful and that goes, works with any of the VEGF inhibitors. The kidney cancer association, we've worked very hard, Linda's part of that nursing advisory board to provide resources for patients. We, as Kerry talked about earlier today, that we have kidney cancer book is available both as a download and as a PDF on the website. One of the things, and Linda will talk more about the conference we had this morning, is that what we're going to be doing is including and adding in some of the side effect information sheets in a new chapter in this book. So again, trying to improve upon the resources that are available. The kidney cancer association website, what we have done here is we have on the left-hand side drug information sheets. So what you'll do is if you click on that link, it will bring you up to this sheet which has not only the targeted therapy information that we have a standardized format that's created and validated with the package inserts from each of the pharmaceutical companies as well as a sheet on understanding targeted therapy and understanding lab results and several of the more common side effects. What I've done is I've printed the top side and the bottom side and these copies are out in between the two printers in the lobby. So if you're not already familiar with the resources that are on the website, grab one of these information sheets and this way too, this is something that goes in our patient education booklet. So what we're really trying to do is minimize the double work that needs to be done. Some of our institutions are allowed to continue to use the pharmaceutical company brand of materials. Others are not. So if they're not able to use it, they've got KCA, non-pharma branded, other than the reference, each of those sheets has the reference to the pharmaceutical website and the package insert. So what we're trying to do is for those community members also that don't get that many patients in their office, easy access to valid information so that they can also feel more comfortable in their own management of these patients as well as the education of patients and families. ChemoCare.com is another resource that Scott Hamilton, the Olympic Skater, helps support. It has, again, a lot of that same information as well as information on other chemotherapy treatments. Next slide, please. So ultimately the goal for the whole oncology team is to find that spot in which we can maximize clinical outcome, maximize quality of life, and maintain duration of therapies for patients. So that's what Linda and I wanted to help do today was to bribe you with some of the options that we use in the U.S. And Linda is now going to talk about other options that we can use to continue to broaden the horizons for our patients with kidney cancer. And we'll take questions at the end and I thank you very much for your time.