Patti B Posted August 19, 2008 Share Posted August 19, 2008 Hi all - I got my scan results, and as I feared, there was some progression in both my right lung tumor and in some lymph nodes. He stressed that it was minor and that everything else is OK. I knew in my heart that this was going to be the case, I just haven't felt good at all lately. Strangely enough, he said its not the cancer that is making me feel bad, its the Alimta because its not fighting anything anymore and just wreaking havoc on my body. Interesting concept. Anyway, I will be starting Tarceva. I have always been afraid of Tarceva because of the side effects and the fact that it works best supposedly in people who have never smoked. He kind of poo-poo'd the side effects and PROMISES me he can fix them all. Yeah, right. I also told him I have been having headaches lately but I think they may be from all the sinus problems I have been having but he is sending me tomorrow for a scan of my head. For some reason, I feel a little more confident that this will be OK but if you guys don't mind, I am saving some of your prayers for that. The way I feel about it is, now think about, what would want to take up residence in MY brain!!! Its really pretty scary in there, even for me sometimes!!! My husband called and I told him nothing. I will wait until he comes home from on the road this weekend to tell him. I just don't have the heart to tell him long distance. I am toying with the idea of telling Nick now.....he starts back to school a week from tomorrow so he would have a week to absorb this before school starts. I just have to be able to tell him without crying and I don't know if I can do that or not. Thank you all for your kind words and prayers - you just don't know how wonderful it makes me feel. I am just really scared right now and don;t know what to do. If anyone wants to share some Tarceva info with me and best ways to treat the side effects, please let me know. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted August 19, 2008 Share Posted August 19, 2008 Oh, Patti. I'm so sad to hear this. But I would take it as a good sign that your doc is remaining positive. Big prayers for you, my friend. Lynn Quote Link to comment Share on other sites More sharing options...
Bruce u Posted August 19, 2008 Share Posted August 19, 2008 Patti you put that other shoe back on and there are plenty of members here that will tie it up for you. Sorry your news wasn't better but at least there is a plan in place. I'm sure there are lots of members here with information on Tarceva. I know I have read alot of stories on here of great results from it. You take care my friend and we are all here to support you. Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 19, 2008 Share Posted August 19, 2008 My dear friend Patti. I am so sorry about your news today. I am very MAD and SAD. You are so brave to be posting this right away...I could not have done it. But so many here care for you so deeply and were waiting. Take some time to let this all sink in and don't rush into telling anybody anything until you are good and ready. Prayers always for you...prayers for strength today (I know you are strong but you can always use more) and prayers for the tarceva to do it's damn job and well maybe just blast it all away once and for all. Enough of this mucking around! Just get rid of it. That can happen too you know. But hey, glad to see you still have your sense of humor...what thing in it's right mind would want to take residence in your head indeed! Stay strong my crazy cancer sister Fondly Sandra Quote Link to comment Share on other sites More sharing options...
Flyman35 Posted August 19, 2008 Share Posted August 19, 2008 Patti - You need to send me that shoe because I am going to smash it to smithereens!!!! I am sending you this big and I hope you can feel it. I hope that the Tarceva will work for you like it seems to be for many others. I am praying hard for you honey. Denise Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 19, 2008 Share Posted August 19, 2008 Hi, Patti: We've been having an extensive discussion about Tarceva on Dr. West's site, cancergrace.org. Here's my latest input... http://cancergrace.org/forums/index.php ... 56#msg2856 ...but it would be a good idea to read the entire thread of (so far) 30 messages, which starts here: http://cancergrace.org/forums/index.php?topic=554.0 A very industrious Canadian member has put together and has been updating a consolidated listing of essays, comments on essays, and forum posts on the former onctalk.com and the new cancergrace.org here: http://cancergrace.org/forums/index.php?topic=618.0 You'll find plenty of tried-and-true tips in those references. My first tip would be to start using (if you're not already) a good lotion like Cetaphil over your entire body after every shower before the rash starts to make its appearance. Don't worry too much about the smoking issue -- that's not a hard-and-fast rule, just a general tendency. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Muriel Posted August 19, 2008 Share Posted August 19, 2008 Patti, I'm so sorry to hear this. Let's hope the Tarceva works as well for you as for some of the others who have tried it. This isn't the news I was expecting to come home to. How dare it progress now that we're just about to let you drive the keg bus and the ark. ((((Patti)))) Muriel Quote Link to comment Share on other sites More sharing options...
blueeye Posted August 19, 2008 Share Posted August 19, 2008 Patti, I too am sending hugs and prayers. I'm sorry your news wasn't better. Talk to you tonight!?? Quote Link to comment Share on other sites More sharing options...
Andrea Posted August 19, 2008 Share Posted August 19, 2008 Suck a duck Not the news hoped for. Your doctor sounds very confident though and that is positive news. Sending good thoughts your way. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 19, 2008 Share Posted August 19, 2008 (((Patti))), This is not what we wanted to hear, but it is good that there is another plan in place. There have been some almost miraculous results from Tarceva. It's a drug that might take a bit of tweaking and adjusting to make it just the right dosage for you, but overall the side effects aren't usually as rough as Alimta can be. I hope that you can look toward this change with hope and promise. You have my prayers that your head is empty... I hate thinking of you being there without your husband, but then again it will give you time to get all the facts together and your thoughts composed. As for Nick, I would explain to him that as often happens with chemo , the body stops responding to the same drug and needs a change. Patti, if you cry it's really ok. It seems we all go around trying not to cry when dealing with thsese things, but it just isn't natural . Sometimes, it's a good thing to show emotion... in my opinion. Oh gosh, I'm not saying the right things here.. but I think Nick will do best when nothing is kept from him, even the fact that you are scared . My heart does go out to you on this. There is a lot of information to be found on Tarceva and it seems that Ned has got you pointed in the right direction to get started learning. Most important of all, you have the folks here who will be here for you every step of the way. Will be waiting for the scan tomorrow, but in the meantime... BIG HUGS TO YOU... Love, Sue Quote Link to comment Share on other sites More sharing options...
Janet B Posted August 19, 2008 Share Posted August 19, 2008 Man Patti - this sucks. But it will be okay - your doctor is positive - YOU stay positive. We all go into it knowing that after a while the drug will stop working - but you can be so thankful that Tarceva is there as an option for you. I have been on it for about 18 months - yes, there are side effects I will not lie. And yes they are tougher than the doctor let on that they would be. I however refuse to go down in dosage for fear of loss of effectiveness so I probably have worse side effects than necessary. I have had them all though - so if you need advice on how to deal with them - let me know! As far as I am concerned as long as it is working I will take anything it will throw at me-and it is really, REALLY nothing that bad. As far as Nick goes. I have a 19 year old son. Sons are tough because they hold it all close to their heart. I know with my son I would tell him now so he can process it before the stress of back to school is on him. I know that when i was diagnosed I couldn't get him to get out of bed to go to school for three days. I definitely understand the difficulty of deciding when and how to tell loved ones - with all three kids away at school when my next results are due - I am already panicking about the way and time to let them know if the results are not good. Anyway - you are always in my prayers - but I will say a few extra for you - Peace to you - Janet Quote Link to comment Share on other sites More sharing options...
Kasey Posted August 19, 2008 Share Posted August 19, 2008 Oh dear, (((Patti))) . I haven't had much to say about anything as of late, but want you to know I've kept current with all that's been going on. You have been in both my thoughts and prayers. Sometimes I think it may be best if I didn't offer up any prayers. Seems God and I find ourselves at odds more often than I would like. Nevertheless, many were said. I am disheartened by this report............no more than YOU, for sure. ANY progression is time for concern ~ be it slight or otherwise. I also understand your trepidation over Tarceva. I do know (almost firsthand) that the side effects can be manageable. Let's hope for it to be working first though! You amaze me how you put hubby and son ALWAYS first throughout this all. I'm waiting for your reward for being so selfless ~ hopefully with getting this under control once again and in a hurry. Try to keep plugging along, Patti, and I'll be right there beside you propping you back up if need be. Hold onto hope always. Much care and friendship coming your way. Kasey Quote Link to comment Share on other sites More sharing options...
shellit74 Posted August 19, 2008 Share Posted August 19, 2008 ((((((((((PATTI)))))))))) Girlfriend!!! What the heck? I am sorry for the news.... I am not going to say bad, because it could of been worse, you still have options. Inform yourself on Tarceva, I agree with Ned, check out cancergrace, and keep your postive attitude woman!!! You can do it. Your a strong person Patti, this I have no doubt about! We all have your back and are here for you anytime... you have my #. I will PM you my personal email too. Use it if you need to vent! still squeezing, SHELLI Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted August 19, 2008 Share Posted August 19, 2008 Patti I did not put things NEARLY as eloquently as these posts here when we talked earlier but you KNOW I am with you every step of the way. I am a phone call away 24/7 as you know.. Sending tons of prayers and positive thoughts for tomorrow, Love and hugs Chris Quote Link to comment Share on other sites More sharing options...
mariannebreathes Posted August 19, 2008 Share Posted August 19, 2008 Hi Patti, you have always been quick to reassure me or make me feel better when I was freaking out. I will pray that your new meds will be effective without major discomfort. Hugs and more hugs Marianne Quote Link to comment Share on other sites More sharing options...
brokenarrow Posted August 19, 2008 Share Posted August 19, 2008 Patti, Keep your chin up, girl. I'm sending a prayeragram straight to the Big Guy from the gulf. I usually keep our conversations to the Airs, but I'm gonna put my tarceva stuff here so you can reference back to it. This is all based on my own experience only, so take it with a grain of salt... To start with, I'm on 150mg daily. Unlike your Alimta, they say that with Tarceva, the stronger the side effects, the better it's working the cancer. You may or may not have similar reactions to what I have had. I'll simply tell you how I've addressed each part. 1) Take it only on an empty stomach. The instructions will be to eat nothing for two hours before you take it and nothing for one hour after you take it. I find that increasing that allowance decreases the occurrence of rumbly tummy. Even coffee or a half handful of pills will stimulate the stomach enough that tarceva will cause some disagreement. I take my tarceva when I first wake up and wait an hour and a half before taking my other pills. 2) If you follow all the rules of taking it on an empty stomach and you still have diarrhea, tell your doctor to prescribe you some lomotil, right away. He might tell you to use immodium, and for a day or so that might be OK, but if it doesn't work right away, tell him and get the prescription and get the diarrhea under control. That's probably the worst one you might have to deal with because if you let it go it can dehydrate you so fast, but being prepared up front or at least very quickly, can help you manage it, and you already know that management is the key to getting through the treatments. 3) If you get a face rash across your cheek bones, ask your doctor for a maintenance dose of keflex as soon as you start getting the rash. Perhaps, you can nip that in the bud early and won't need any of the following information about it. The face rash is a lot like acne but you cannot treat it like acne. Don't use any acne medicines on it. A warm wet wash cloth and a gentle cleansing with clean warm water once a day or two if your skin can handle it. As the pustules are cleaned there may be a little bleeding but it's not painful and following the warm cleansing with a cold cleansing will stop it. Like acne you don't want to mash on the pustules. There is a gel that your doctor can prescribe called clindimycin(sp) that will help dry the pustules if you get them bad. (Again do not use acne products). After getting the infection part of the rash addressed, you may begin to have a dry scaly rash in the same place across your cheek bones. I use Neutragena body lotion on it and it does very well. You may have a more appropriate lady lotion, I don't know. 4) The mouth or throat sores can be avoided with some diligence and tenderness. Find you the softess toothbrush you can find. I like the plain jane oral B soft large. Be gentle with it too. Try not to scratch your gums and such. Keep you some fresh salt&soda rinse and use it daily or more. Gargle with it, swish with it. If you can tolerate it swallow the tiniest drop of it. Kill all the bad little bugs in your mouth. Chew a vitamn E once a day and swish it all around in your mouth. If you get a mouth sore, do the E more often. Two or three times a day. Wal-mart sells a vitamin E lip balm now. I keep a regular supply of it and keep my lips smeared with the stuff. It helps a lot to keep the lips from cracking and keeps the salt&soda solution from drying them too. The watch what you eat. hard things that will scratch the inside of your mouth should be avoided. No alcohol. I mean toothpaste or mouthwash. I use the crest sensative tooth paste original formula and it's even a little harsh sometimes. 5) You may have to take breaks, readjust dosage, etc. About once a month, no matter how hard I try, I seem to get an ulcer in my mouth or throat. I've tried a few times and they just will not heal while I'm taking the tarceva. Per my doctor's instructions, I get off of the Tarceva for a couple days until it heals most of the way up then get back on the Tarceva. I've heard that the sun is a big no-no while taking Tarceva, but I have not personally found that to be a problem. I work and play in a very sunny environment and have not had a problem with that, however, I am not real fair skinned and have almost never sunburned, having the genetics to tolerate the sun quite a bit. I'm not sure I've ever really completely conquered the diarrhea problem but I'm a caffeine junky and suspect it to be a contributor to the problem. Again, this is all stuff that I have personally concluded from my specific experience. I understand that every Tarceva experience is different, but hopefully some of this information will help you manage your personal experience with it. One really wonderful thing about it is that it works very well for so many people. Feel free to call on me any time, Friend. Will Quote Link to comment Share on other sites More sharing options...
shellit74 Posted August 19, 2008 Share Posted August 19, 2008 Patti to add to Wills' info on mouth sores.... I have no experience with Tarceva... Dad was not a canidate as he had SCLC and we were told it was for NSCLC.... but I do know a bit about mouth sores and the things that are prescribed for them... if what will suggests is not working for you, your Onc can order a concoction that helps... sometimes its a swish and spit ro swish and swallow... it just depends on the location of the sores.... the concoctions that I made the most at the cancer center was called MALIDOBEN..... broken down it means: MA--for mallox, LIDO--for Lidocaine, and BEN for Benadryl. equal parts of each. its kinda cool to make, as when its made and adding the mallox part last, it looks like a lava lamp... untill shaken to mix it all together. Sometimes there are other things that are added.... such as a steroid... It is also called Magic Mouthwash in other places. hope this helps Shelli Quote Link to comment Share on other sites More sharing options...
Ry Posted August 19, 2008 Share Posted August 19, 2008 Patti, John was on Tarceva for a long time and Iressa before that. Both of these drugs were like a miracle, they held him stable and kept the cancer in check for several years. You've been given great advice on the rash (which is nothing like a rash it's just that no other word fits the stuff). Make sure you moisturize it like crazy and get a good cream rinse if you get it on your scalp. Purchase sunblock as you become photosensitive and burn easy. John did not fit the profile for Tarceva either -- I hope it works for you! About Nick, that will be the hardest part of all this, but you'll find a way. Quote Link to comment Share on other sites More sharing options...
MarGre Posted August 19, 2008 Share Posted August 19, 2008 Patti - first, it sounds like your doctor is still positive, always a good sign. I'm sorry you've had any progression because none of us want the cancer taking up any more unauthorized space in our body that it already has. I was on Tarceva last year and it worked keeping me stable 10 months. Not many problems except the worst rash my oncologist had ever seen - ended up going to 100 mg from 150 and on antiobiotics. It cleared up, but then my toes developed giant blisters which enveloped the entire toes. Luckily I live in Florida where I can wear sandals anytime. Again, my onc had never seen anything like it, so I don't think it's a common side effect. They too cleared up and for the last 6 months had relatively little problem with the Tarceva. Good luck with the Tarceva - I hope you have a great response w/minimal effects! Quote Link to comment Share on other sites More sharing options...
carolhg Posted August 19, 2008 Share Posted August 19, 2008 Certainly am praying for you! I have heard of good results with tarceva. I think that J-Me here on LCSC is one who has had great results with tarceva. Prayers Carol Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 19, 2008 Share Posted August 19, 2008 Hi Patti, Sorry to hear about the set back but glad there is a game plan. I have had slight progression at times myself but still felt things could always be worse. Had very good results with Tarceva for about 16 months. Only side effects I had where rash and diarrhea. Rash (only had it for about 2 or 3 months if I remember correctly) went away on it’s own, the diarrhea did not (no matter what we tried) so we adjusted the dosage from 150MG to 100MG and that cleared that up. Still had good results with the dosage at 100MG. We all get scared and afraid of the unknown at times so it is perfectly understandable about how you feel. Just remember everyone is different and reacts differently so try to keep an open mind and think positive. Try not to get to far ahead of yourself, wait until you cross that bridge then deal with it. Work closely with your doctor/nurses. Below is some information (off the Tarceva web site) that I hope helps you. Prayers for the best. Rich http://www.tarceva.com How to Take Tarceva Do not take Tarceva with food. Take Tarceva at the same time each day between meals. It's important to take Tarceva one hour before or two hours after eating. Consider setting a timer to remind you to take Tarceva at the same time each day. Taking Tarceva with food may increase your chance of developing side effects. Tarceva (erlotinib) is a pill you take once a day. The recommended amount is 150 mg a day. Take Tarceva every day as prescribed by your doctor. If you miss a day, take your normal amount the next day. Do not double your daily prescribed dose of Tarceva. Let your doctor know if you miss a dose of Tarceva. Avoid grapefruit and grapefruit juice while taking Tarceva as they may affect how well Tarceva works. Taking other medications with Tarceva may affect how well Tarceva works. So, tell your doctor or nurse if you are taking any other medications and supplements, including vitamins and herbal products. Follow your doctor's instructions on how to take Tarceva. Do not stop taking Tarceva unless your doctor tells you to do so. Q & A Q. What is Tarceva? A. Tarceva (erlotinib) is a pill taken by mouth once a day to treat your cancer. Tarceva is used for patients with advanced NSCLC who have received at least one previous chemotherapy regimen that did not work. Take Tarceva at least one hour before or two hours after eating. Q. How does Tarceva work? A. Tarceva is a targeted cancer treatment. Unlike many traditional chemotherapies, Tarceva affects certain cancer cell activities. Tarceva is designed to block tumor cell growth by targeting the protein in your body called the Human Epidermal Growth Factor Receptor 1 (HER1/EGFR). This protein is important for tumor cell growth in NSCLC. Q. What are Tarceva's benefits? A. Tarceva is an FDA-approved targeted cancer therapy clinically proven to help some NSCLC patients live significantly longer. In addition to improving survival, Tarceva may slow or stop the growth of cancer - and may even shrink the tumors in some patients. Tarceva is convenient to take; it's a pill you take by mouth once a day as prescribed by your doctor. Individual results may vary. Q. Does Tarceva really work? A. Though individual results may vary, Tarceva has been shown to help some patients live longer. In a large clinical study, 31.2% of patients who were taking Tarceva were alive one year after they started Tarceva, as compared with 21.5% of patients who took a sugar pill. Additionally, large clinical studies have also proven that Tarceva can slow or stop the growth of cancer cells in some patients. Speak with your doctor about whether Tarceva is right for you. Q. How do I know if I am a candidate for Tarceva? A. If you have locally advanced or metastatic NSCLC and have received at least one chemotherapy regimen that has not worked, you may be a candidate for Tarceva. Speak with your doctor about whether Tarceva is right for you. Q. When in my treatment regimen can Tarceva be used? A. Tarceva is approved as monotherapy, meaning it is used without chemotherapy, for second- and third-line treatment of advanced NSCLC patients. This means that your doctor can prescribe Tarceva after one chemotherapy regimen has not worked. Q. What common side effects may I experience with Tarceva? A. Rash and diarrhea were the most common side effects associated with Tarceva. They were generally mild to moderate. In large clinical studies, severe rash occurred in 9% of patients and severe diarrhea occurred in 6% of patients. You may also have other changes in your skin. Q. What can I do if I experience a rash when taking Tarceva? A. A rash may appear on your skin within 8-10 days of starting Tarceva therapy, most likely on your upper body or head. It may look like acne or dry skin, but it is not acne. Avoid acne-related treatments, including products with benzoyl peroxide. Rash is a common reaction to Tarceva. If you get a rash, do not stop taking Tarceva unless your doctor instructs you to do so. Try using a mild soap to wash areas affected by the rash, moisturize the area with a mild lotion and avoid sun exposure. You may use a thick, alcohol-free cream on dry areas of the body. Also, use a sunscreen of SPF15 or higher, preferably containing zinc oxide or titanium dioxide. Call your doctor if you are concerned about the rash. Your doctor may prescribe drugs to help the rash or dry skin. Please see Managing Tarceva Side Effects for more information. Also, it's important to take Tarceva at least one hour before or two hours after eating. Taking Tarceva with food may increase your chance of developing side effects. Q. What other important information should I know about Tarceva? A. All drugs have the possibility of causing some side effects. Some rare, but possibly serious, side effects may occur with Tarceva. In large clinical studies, there were infrequent reports of a lung injury known as Interstitial Lung Disease (ILD) and have included fatalities. Tarceva may cause liver problems. Let your doctor know if you have a history of liver disease. Women should also avoid becoming pregnant or breastfeeding while taking Tarceva. Please see Important Information to Know for additional rare, but possibly serious side effects. Q. What signs or symptoms should I watch for? A. Call your doctor right away if you have the following signs or symptoms: Severe or persistent diarrhea, nausea, loss of appetite or vomiting Onset or worsening of unexplained shortness of breath or cough Eye irritation Rash or other changes in your skin Let your doctor know if you are taking other prescription medications, over-the-counter drugs or herbal supplements. Q. How do I take Tarceva? A. Tarceva is a pill taken by mouth once a day without food as prescribed by your doctor. It's important to take Tarceva at least one hour before or two hours after eating. Taking Tarceva with food may increase your chance of developing side effects. Take Tarceva at the same time each day between meals. Q. Where can I get Tarceva? A. Your insurance plan may offer various options for coverage. Choose a pharmacy participating in your insurance or health plan to ensure your prescriptions are covered. Q. Where can I find insurance coverage information for Tarceva? A. Patients will need to speak with their insurance provider to determine if Tarceva is covered. Each provider will respond differently. However, Medicare supplemental drug plans do provide coverage for Tarceva for advanced non-small cell lung cancer. Q. How long has Tarceva been available for NSCLC? A. The Food and Drug Administration (FDA) approved Tarceva for advanced Non-Small Cell Lung Cancer on November 18, 2004. For more information see the FDA Approval Letter. Q. Are there other Tarceva clinical trials available for patients with advanced NSCLC? A. You can find information on additional clinical trials of Tarceva (erlotinib) by visiting ClinicalTrials.gov Important Information to Know Some rare, but possibly serious, side effects may occur with Tarceva (erlotinib). In clinical studies, there were infrequent reports of lung injuries similar to Interstitial Lung Disease (ILD) in patients receiving Tarceva for the treatment of NSCLC or other advanced solid tumors. Reports of these ILD-like lung injuries have been serious and have included deaths in some patients. In patients receiving Tarceva for NSCLC in a clinical study, the incidence of ILD-like events was approximately 0.8%. No difference was seen in the number of patients with ILD who took Tarceva, compared with patients on sugar pills. Tarceva may cause harm to an unborn baby or may cause possible risk of pregnancy loss. Women should avoid becoming pregnant and avoid breastfeeding while taking Tarceva. Tarceva may cause liver and/or kidney problems in some patients. Cases of serious liver or kidney problems, including deaths, have been seen. Let your doctor know if you have a history of liver or kidney disease. Call your doctor right away if you have these signs or symptoms: Serious or persistent diarrhea, nausea, loss of appetite or vomiting New or worsening shortness of breath or cough Eye irritation Before you start taking Tarceva Clinical studies have shown that taking Tarceva with certain foods and other drugs may affect how well Tarceva may work for you. Let your doctor know if you are taking other prescription and over-the-counter drugs or herbal supplements. Do not eat grapefruit or drink grapefruit juice while taking Tarceva. Tarceva may also affect other medications you are taking. When taking Tarceva with some drugs, such as blood thinners (Coumadin® *, warfarin), there may be an increased risk of bleeding. If you smoke, you should stop smoking while taking Tarceva as it may affect how well Tarceva may work for you. Common side effects of Tarceva Rash and diarrhea were the most common side effects associated with Tarceva. They were usually mild to moderate. In clinical studies, severe rash and diarrhea occurred in 9% and 6% of patients, respectively. You may also have other changes in your skin. The rash associated with the Tarceva therapy may appear on your body or face, typically within 8 days of starting this treatment. However, the rash may occur anytime during treatment with Tarceva. The rash is not an allergic reaction. It may look like acne or dry skin. It is not acne. Talk to your doctor if a rash occurs. Typically, diarrhea may develop within 12 days of starting the Tarceva. In the NSCLC clinical study, Tarceva did not have some of the side effects of traditional chemotherapy, such as a low number of infection-fighting white blood cells. Tarceva was also less likely to be associated with total hair loss. Always let your doctor or nurse know if you experience any side effects. Your doctor may change your dose. Ask your doctor or nurse for the best way to handle drug-related side effects. *Coumadin® is a registered trademark of Bristol-Myers Squibb Company. Managing Tarceva Side Effects Rash and diarrhea were the most common side effects associated with Tarceva (erlotinib). They were generally mild to moderate. In a large clinical study, 66% of the patients receiving Tarceva experienced mild-to-moderate rash, while 48% of patients had mild-to-moderate diarrhea. In the NSCLC study, severe rash and diarrhea occurred in 9% and 6% of patients, respectively. You may also have other changes in your skin. Your doctor may adjust the amount of Tarceva you are taking if you develop a rash. In a large clinical study, Tarceva did not have some of the side effects of traditional chemotherapy, such as a low number of infection-fighting white blood cells. Tarceva was also less likely to be associated with total hair loss. Let your doctor or nurse know if you experience side effects. Side effect Self-help tips Rash and other skin changes. Soon after you start taking Tarceva, a rash may appear-most often on your upper body or head. It may look like acne or dry skin. This is a common reaction to Tarceva. Your doctor may prescribe drugs to help treat the rash or dry skin. If you get a rash with Tarceva, do not stop taking Tarceva unless your doctor tells you to do so. Use a mild soap to wash the affected area. Moisturize the area with a mild alcohol-free cream. Avoid sun exposure. Use a sunscreen of SPF15 or higher, preferably containing zinc oxide or titanium dioxide. Wear a hat. Avoid over-the-counter acne-related treatments, including products with benzoyl peroxide. Remove any dermatologist-approved makeup with a gentle liquid cleanser. Diarrhea. This is most likely to occur within the first week or two of Tarceva treatment. As directed by your doctor, diarrhea may be treated with over-the-counter antidiarrhea products. Ask your doctor which product may be right for you. If your diarrhea worsens or persists, tell your doctor. Take small sips of liquids (such as sports drinks without sugar) often throughout the day. Eat mild food, such as toast and crackers. Limit spicy foods. Call your doctor right away if you have these signs and symptoms: Severe or persistent diarrhea, nausea, loss of appetite or vomiting Onset or worsening of unexplained shortness of breath or cough Eye irritation Rash or other changes in your skin Some rare, but possibly serious side effects may occur with Tarceva. In large clinical studies, there were infrequent reports of lung injuries similar to Interstitial Lung Disease (ILD) in patients receiving Tarceva for the treatment of NSCLC or other advanced solid tumors. Reports of these ILD-like lung injuries have been serious and have included deaths in some patients. In patients receiving Tarceva for advanced NSCLC in a large clinical study, the incidence of ILD-like events was approximately 0.8%. No difference was seen in the number of patients with ILD who took Tarceva, compared with patients on sugar pills. Tarceva may cause harm to an unborn baby or may cause possible risk of pregnancy loss. Women should avoid becoming pregnant and avoid breastfeeding while taking Tarceva. Tarceva may cause liver problems. Let your doctor know if you have a history of liver disease. Contact Us Clinical Trial Information Support Line For inquiries about our pipeline products and clinical trials, please submit a request through our information request form or call (888) 662-6728. Tarceva Access Solutions Tarceva Access Solutions provides coverage and reimbursement support, patient assistance and informational resources for both health care providers and their patients. Phone: (888) 249-4918 Fax: (888) 249-4970 Hours Available (Pacific Time): 6AM-5PM M-F Web: www.TarcevaAccessSolutions.com Drug Safety / Adverse Events Contact the Drug Safety Department at OSI Pharmaceuticals at (877) 827-2382 to report any adverse events experienced by patients receiving Tarceva. Hours Available (Pacific Time): 7:30AM-4:00PM M-F Voice Mail available 24 hours a day, 7 days a week Genentech Corporate Headquarters Phone: (650) 225-1000 Fax: (650) 225-6000 Mail: Genentech, Inc. 1 DNA Way South San Francisco, CA 94080-4990 Additional Genentech Contact Information is available at: www.gene.com/gene/contact/inquiries-info.html OSI Pharmaceuticals Corporate Headquarters Phone: (631) 962-2000 Fax: (631) 752-3880 Mail: OSI Pharmaceuticals, Inc. 41 Pinelawn Road Melville, NY 11747 Additional OSI Pharmaceuticals Contact Information is available at: www.osip.com/contact Quote Link to comment Share on other sites More sharing options...
cat127 Posted August 19, 2008 Share Posted August 19, 2008 I'm so so sorry to hear this Patti, but Tarceva has been working for Kelly so far and she too doesn't fit the profile. She smoked for over 40 yrs, having quit only 7 yrs before diagnosis. And she smoked A LOT. Ned sent you to the thread on cancergrace where some of us listed the issues that have been experienced and then Bev was sweet enough to compile a link to all the posts and discussions about it. You can learn a lot there. Someone mentioned taking prilosec with Tarceva, that actually shouldn't be taken with Tarceva, as it lowers the blood levels of erlotinib by nearly a half. Which stinks as I do think it also causes heartburn. Here is a link for folks info http://emc.medicines.org.uk/emc/assets/ ... NDICATIONS The prilosec info is in section 4.5. You are of course in my prayers and I'm sure you will find the right words to tell Nick. Let him be your strength as well, you need that support. Of course, you also have us, just in case you forget. Quote Link to comment Share on other sites More sharing options...
fillise Posted August 19, 2008 Share Posted August 19, 2008 Patti--you don't need to save any prayers. New ones are coming your way! A lot of folks have had good, long term response on Tarceva and I'm sure they will tell you how to handle the side effects (which are a sign it is working, BTW). I'll be saying prayers that your head scan comes out clean tomorrow, Susan Quote Link to comment Share on other sites More sharing options...
Nova Posted August 19, 2008 Share Posted August 19, 2008 Patti, Know that I'm thinking of you, and saying lot's of prayers. If there's anything I can do "long distance", please let me know. Love, Nova Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 19, 2008 Share Posted August 19, 2008 there was some progression in both my right lung tumor and in some lymph nodes. He stressed that it was minor and that everything else is OK. Now Patti, read the quote and focus on one word: MINOR. I also like your doctor's perspective on how you've been feeling and agree wholehardedly. How many of us are experiencing pain, discomfort etc and don't have a clue if it's being caused by the treatment. Honey I am so so sorry the news wasn't better but take heart and focus on the positive. You have lots of folk here who have done or are doing Tarceva successfully and are generously offering all they know to help you deal with any problems that arise with it. Use them, suck them dry for information. But honestly, I'm terrified of it too and don't know why. Maybe we're just afraid the rash will make us look really bad. I agree with others who say share with Nick and don't worry about crying. How can that young man know it's o.k. to let the tears flow sometimes when things just don't go as positively as we'd like. O.k., I'm going to put myself out there and you can take it or leave it. I think it is wonderfully generous of you to keep bad news from your husband on the road to keep him safe. Does he know you do this? Has he ever asked, how long have you known this? Has he asked not to tell him until he comes home? You may be shortchanging him in thinking he can't handle it and keep himself safe. If so, you could be really short-changing yourself in not having his virtual shoulder to cry on. You know how much fun it is driving that Keg bus, well that's how much relief you might be able to experience crying on the phone with him and having him say, Honey, I'm so sorry. Judy in Key West Quote Link to comment Share on other sites More sharing options...
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