lhudak Posted June 19, 2008 Share Posted June 19, 2008 Hi, I am new on this site and still navigating. I am a caregiver for my sister who had lunger cancer stage one at 49 years old non smoker and thought they got it all and went to the brain last year. It is so hard coping with a loved one with this disease. Looking for support and people with same experience. I hope to get her on this email for a way of support. She has had 2 brain surgeires, first surgery left her left side paralized (anyone have this?) supposedly shouldn't have happened. She gained some mobility back. Second surgery showed all scar tissue. Two gamma knifes since then and they now want her to go on Tarceva and she is very scared because of the side effects. Anyone on this drug and how are the side effects and how do you feel? Any help and support is greatly appreciated. Laurie Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 19, 2008 Share Posted June 19, 2008 Hi, Laurie. So sorry about your sister's dx and subsequent problems, but glad you found us and hope we can be of help to you both (this is such a great group; has helped me keep going during the bleakest of times). I was on Tarceva for several months earlier this year and the only side effect I experienced was the skin rash (which you actually want to have as it's a good sign that the Tarceva is working). It's an oral daily pill which is a heckuva lot better than infusions; and they will also provide your sister with pills, ointment, etc. to help alleviate the skin sensitivity, and if I were your sister, I'd definitely want to try it out as when it works, it actually has the least side effects. Best of luck to you both, Carole Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 19, 2008 Share Posted June 19, 2008 Hi, Laurie, welcome to the group. While everyone is different, and some do have a difficult time with Tarceva (rash, diarrhea, and/or fatigue), I'd say that on the whole it has a better effectiveness versus side effects ratio than about anything else out there. I've been on it close to 9 months, and now that my skin problems are under control I find it easy to tolerate. There's some info in the "my story" post (the link below), and I'd be glad to send you more first-hand details. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Dave Posted June 19, 2008 Share Posted June 19, 2008 As Ned and Carole have said, Tarceva at the moment is about the best thing going. I have been taking it for 8mo or so and have had a few problems but nothing that would stop me from taking it. Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 19, 2008 Share Posted June 19, 2008 Laurie- Welcome to the forum. You will find there are tons of great advice here from some of the best folks around. Ask any question, someone here will be able to help you out. I have no first-hand knowledge of Tarceva but they say when it works, it works well. Hoping for much success with your sister's treatment. Keep us posted on how it goes. Hugs - Patti B Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 19, 2008 Share Posted June 19, 2008 Hi Laurie. You have had a warm welcome so far. Add mine. So sorry you have to be here but it is a good place for support and information. Ask any question and it will be answered. Sandra Quote Link to comment Share on other sites More sharing options...
LovesLife Posted June 19, 2008 Share Posted June 19, 2008 Laurie - welcome, although I am so sorry that your sister's diagnosis brings you here. This is a great bunch of caring people and I am sure you will get the support and guidance you need here. Linda Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Carole, thank you for responding and making my day. It is good to hear that you only had the rash. You mentioned you were only on for several months? Are you not taking it now and why? I had the impression from my sisters oncologist that she wants her on this daily indefinitely? Thank you again for responding and I hope you are doing well. "CaroleHammett"]Hi, Laurie.So sorry about your sister's dx and subsequent problems, but glad you found us and hope we can be of help to you both (this is such a great group; has helped me keep going during the bleakest of times). I was on Tarceva for several months earlier this year and the only side effect I experienced was the skin rash (which you actually want to have as it's a good sign that the Tarceva is working). It's an oral daily pill which is a heckuva lot better than infusions; and they will also provide your sister with pills, ointment, etc. to help alleviate the skin sensitivity, and if I were your sister, I'd definitely want to try it out as when it works, it actually has the least side effects. Best of luck to you both, Carole Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Linda, thank you for your reply....this is a great website for support. You are doing great keep up the good work!!! I am happy I discovered this great support system. Best to you. Laurie [ quote]"LovesLife"]Laurie - welcome, although I am so sorry that your sister's diagnosis brings you here. This is a great bunch of caring people and I am sure you will get the support and guidance you need here. Linda Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Dear Sandra, I am amazed at all the young people. I am your age....I live fearful of what I'm going to get but I know I should not. But I am so happy for this support system and happy to hear that your treatment is working. Keep up the good work. Thank yoiu again for your time.....I am glad I found everyone! ] "SandraL"]Hi Laurie. You have had a warm welcome so far. Add mine. So sorry you have to be here but it is a good place for support and information. Ask any question and it will be answered. Sandra Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Hi Linda, not sure I responded as this is new to me but wanted to thank you for taking the time to welcome me. You are doing great...keep up the good work. I look forward to making new friends on this site. "LovesLife"]Laurie - welcome, although I am so sorry that your sister's diagnosis brings you here. This is a great bunch of caring people and I am sure you will get the support and guidance you need here.Linda Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Patti, a huge thank you for taking the time to welcome me. I am sure glad I found this support system. You certainly have been through a lot and I'm so glad you are doing well. Keep up the good work! I have learned to take one day at a time with my sister and with the grace of god we can get through it. Wishing you well. Laurie "Patti B"]Laurie-Welcome to the forum. You will find there are tons of great advice here from some of the best folks around. Ask any question, someone here will be able to help you out. I have no first-hand knowledge of Tarceva but they say when it works, it works well. Hoping for much success with your sister's treatment. Keep us posted on how it goes. Hugs - Patti B Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 Thank you for your reply...so glad I found a support system...I felt so loss out there. Do you take the Tarceva every day or take a break? I was under the impression my sisters oncologist wants her on this indefinitely. Any diarehea? You mentioned some problems any to share? Is this drug keeping everything stable it sounds like? I thought it was for brain only? But you mentioned your brain was clear...guess I'm confused if it works on the whole body?? "scman"]As Ned and Carole have said, Tarceva at the moment is about the best thing going. I have been taking it for 8mo or so and have had a few problems but nothing that would stop me from taking it. Quote Link to comment Share on other sites More sharing options...
JB Posted June 19, 2008 Share Posted June 19, 2008 Laurie welocme to the site. Colleen had brain surgery to remove one large Met, and all went well. I'm sorry to hear that your sister had some complications. All surgeries have their complications, and when you start messing with someone's noggin, it ups the ante a bit. Col still suffers from headaches, but we can't say that it's from anything related to the surgery, I guess just part of the mess of the disease. As for Tarceva, Col's been on it for a year. I think she would tell you it's a piece of cake considering everything else she's been through. In fact, prior to Tarceva, Col would have told you that the brain surgery was the EASIEST part of her treatment, as Chemo really knocked the crud out of her. The Oncologist's quote was "we'll stay on it untill it stops working, and then we'll find something else." There'll be some side effects, but for her they aren't anything crazy. Rash is the most predominant, and it goes from bad, to worse, to absolutely ridiculously terrible, and back to just bad again. Small price to pay for the results we've seen from Tarceva. Best of luck. Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 19, 2008 Author Share Posted June 19, 2008 HI, I think we went to a surgeon with not enough experience. Unfortuantely now she has to pay for it....it would be easier to live iwth the illness she said than not to walk. My sister too experiences headaches all the time...must be the nature of so much going on in the brain. Did Colleen go on Tarceva immediately after first tumor? My sister has had 3 tumors since and gamma knife has killed them but they want her on Tarceva for more quality of life since they keep creeping up. Is the rash on the face or body? I know my sister is scared. I'm gladTarceva is working. I just don't understand these young ages this is happening too. Any Diareahea? Thank you for your response. Best, Laurie "JB"]Laurie welocme to the site. Colleen had brain surgery to remove one large Met, and all went well. I'm sorry to hear that your sister had some complications. All surgeries have their complications, and when you start messing with someone's noggin, it ups the ante a bit. Col still suffers from headaches, but we can't say that it's from anything related to the surgery, I guess just part of the mess of the disease.As for Tarceva, Col's been on it for a year. I think she would tell you it's a piece of cake considering everything else she's been through. In fact, prior to Tarceva, Col would have told you that the brain surgery was the EASIEST part of her treatment, as Chemo really knocked the crud out of her. The Oncologist's quote was "we'll stay on it untill it stops working, and then we'll find something else." There'll be some side effects, but for her they aren't anything crazy. Rash is the most predominant, and it goes from bad, to worse, to absolutely ridiculously terrible, and back to just bad again. Small price to pay for the results we've seen from Tarceva. Best of luck. Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 19, 2008 Share Posted June 19, 2008 Hi, Laurie. Unfortunately, despite my having developed the rash, the Tarceva didn't work for me (I have squamous cell carcinoma rather than adenocarcinoma, etc. so it was a long shot going in). Otherwise, if it had worked, I'd be on it so long as it kept working (we have at least one member here who's been on it three years and it's still working for her! ). Carole Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 20, 2008 Author Share Posted June 20, 2008 HI, my sister wants to know when it comes to the rash, where does it come out? Body, Face etc? Is there topicals to control it? I also heard it causes coarse hair? Any problems with hair growth? "JB"]Laurie welocme to the site. Colleen had brain surgery to remove one large Met, and all went well. I'm sorry to hear that your sister had some complications. All surgeries have their complications, and when you start messing with someone's noggin, it ups the ante a bit. Col still suffers from headaches, but we can't say that it's from anything related to the surgery, I guess just part of the mess of the disease.As for Tarceva, Col's been on it for a year. I think she would tell you it's a piece of cake considering everything else she's been through. In fact, prior to Tarceva, Col would have told you that the brain surgery was the EASIEST part of her treatment, as Chemo really knocked the crud out of her. The Oncologist's quote was "we'll stay on it untill it stops working, and then we'll find something else." There'll be some side effects, but for her they aren't anything crazy. Rash is the most predominant, and it goes from bad, to worse, to absolutely ridiculously terrible, and back to just bad again. Small price to pay for the results we've seen from Tarceva. Best of luck. Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 20, 2008 Author Share Posted June 20, 2008 Hi Ned, I thought of one other questions in relation to the rash...where was yours and is itchy? Does medicine control it? "recce101"]Hi, Laurie, welcome to the group. While everyone is different, and some do have a difficult time with Tarceva (rash, diarrhea, and/or fatigue), I'd say that on the whole it has a better effectiveness versus side effects ratio than about anything else out there. I've been on it close to 9 months, and now that my skin problems are under control I find it easy to tolerate. There's some info in the "my story" post (the link below), and I'd be glad to send you more first-hand details.Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 20, 2008 Author Share Posted June 20, 2008 Carol, were you tired on TArceva? My sister would like to work but is the rash unsightly? My sister is worried. thank you "CaroleHammett"]Hi, Laurie.Unfortunately, despite my having developed the rash, the Tarceva didn't work for me (I have squamous cell carcinoma rather than adenocarcinoma, etc. so it was a long shot going in). Otherwise, if it had worked, I'd be on it so long as it kept working (we have at least one member here who's been on it three years and it's still working for her! ). Carole Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 20, 2008 Share Posted June 20, 2008 Hi, Laurie. I never suffered fatigue while on Tarceva, and my rash was mostly confined to my face (more like acne than a rash). It was mainly kept under control with doxycycline capsules and several ointments prescribed by my oncologist. It shouldn't interfere with your sister's working. Carole Quote Link to comment Share on other sites More sharing options...
lhudak Posted June 20, 2008 Author Share Posted June 20, 2008 Carole, thank you so much for all your help and feedback. This has been encouraging for my sister. I hope you are doing well. Best, Laurie "CaroleHammett"]Hi, Laurie.I never suffered fatigue while on Tarceva, and my rash was mostly confined to my face (more like acne than a rash). It was mainly kept under control with doxycycline capsules and several ointments prescribed by my oncologist. It shouldn't interfere with your sister's working. Carole Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 20, 2008 Share Posted June 20, 2008 Hi, Laurie: I'm sending you a Tarceva side effects article I'm planning to post on cancergrace.org -- it will be in a Private Message, so check the link just under Profile towards the top of the screen. If you have any more questions after reading that, you can either send a PM or post a question as seems appropriate. You should be getting it in a few minutes. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Janet B Posted June 20, 2008 Share Posted June 20, 2008 Laurie I have been on Tarceva for over a year now. You can look at my profile and see that it has worked very well for me. Yes there are side effects - but I will take them anyday as long as I remain NED! As far as the rash - mine is mostly on the face - sometimes my torso and thighs. It got bad after being on the Tarceva about 3 weeks and then tapered off. Now it comes and goes - but never anything really crazy. I go to a dermatologist for it and she prescribes - Clindamycin which is a cream that really helps. The diarrhea also seems to be big concern to you - again it is nothing I can't deal with - I watch what I eat and how much and I always keep imodium on hand. All of the side effects that I have experienced have been treatable. The plan is to stay on Tarceva as long as it is working. As far as your sister working - I continued to work as a preschool teacher all year while on the Tarceva. Read the info Ned is sending you - it is great - and know that my prayers are with you and your sister Peace - Janet Quote Link to comment Share on other sites More sharing options...
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