Bandit1776 Posted March 4, 2014 Share Posted March 4, 2014 My name is Cindy, and I am very new to Lungevity. Hopefully, I will get this right. I am a lung cancer patient and have been for 1 year. I have been through several types of chemotherapy for the last 10 months. My oncologist feels I have had enough chemo indused into my body for now. He therefore is starting me on a targeted chemo pill called Tarceva. I have been reading and studying about this pill for the last week, and losing a lot of sleep over it. I am scared to death of the side effects I have been reading about. My main concern is the ugly rash that I may develop while taking Tarceva. I don't want my quality of life to lessen because I don't want to go out in public and be noticed. Anyway, if I could find somebody to talk/chat to about this pill,. I would greatly appreciate it. I think I would feel better mentally if I could actually talk to somebody who is going through the same thing I am about to experience. I have until next Monday, March 10, to make up my mind and notify my oncologist if I am going to press on with this or just decide not to take the pill altogether. I do understand everybody is different, and side effects affect everybody differently. Any information or experiences I can get will be greatly appreciated. Thank you so much in advance. Cindy Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 5, 2014 Share Posted March 5, 2014 Cindy MY wife dealt with this same issue when Tarcave first hit the market years ago.. was brand new to LC people... about 8 and half years ago.... she had the rash and the rash indicates it is working. rash was probably worst part of taking the drug as I recall... she also was scared to go out and did some great make up work when needed.. the rash does not always affect areas that are seen of course... her secret was Nivea with the blue cap and good non allergenic make up.... the decision is yours and yours alone to make but we are always here fro support Quote Link to comment Share on other sites More sharing options...
Andrea Posted March 5, 2014 Share Posted March 5, 2014 Hi. My dad has been on Tarceva for a few years .I do have to say, he developed the bad rash and stomach issues. But he has learned to live with it, although unpleasant. The good news it is keeping him alive and he is functioning pretty normal. He does take heavy doses of antibiotics for the rash. Not everyone develops the rash of course. When his rash gets super bad, like scary to be see in p ublic, he stops Tarceva for a week to let it calm down and then goes back on. My dad will be on it for the rest of his life and despite the side effects, it really is an amazing pill. It doesn't cause fatigue or other issues. Just tummy and rash. I wanted to be super honest. If you have f urther questions email me at andreascheff@roadrunner.com Quote Link to comment Share on other sites More sharing options...
Bandit1776 Posted March 5, 2014 Author Share Posted March 5, 2014 Hi Katie...thanks so much for the response. I would greatly appreciate it if you could connect me with a survivor whome I could talk/chat with about their experience with Tarceva. That would be awesome. I see my oncologist on Monday, at which time I have to let him know if he should get me started on the pill. I am doing as much research as I can before I make up my mind. Right now reading about some of the side effects has me so stressed out that I am tempted to say "no"to Tarceva. It is my only other option, so I would like to give it a chance. I just don't want my quality of life to be lessened. I hope it will allow me to lead a somewhat normal life. Again, thanks so much in advance, Katie. I do appreciate you contacting me. Cindy Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 5, 2014 Share Posted March 5, 2014 dropped Katie a note so she is probably working on it now.. always remember your never alone here .. post up when you want and need to .. someone is always around to help out or get the help your looking for.... I am going on about 9 or 10 years here so... I know how you feel from caregiver side of the fight..... Quote Link to comment Share on other sites More sharing options...
Kellie Posted March 13, 2014 Share Posted March 13, 2014 I was diagnosed last May with stage 4 non small cell lung cancer. I had chemo of carbopatinum (sp), Olympta (sp) and taxol. All of them made me extremely sick. I lost 30 pounds and went to the hospital with dehydration, anemia and neutropenia each time. With blood transfusions and fluids I would sort of bounce back, but I did loose all the hearing in my right ear and even after all these months my kidneys are only at 60%. It has been a long and rough road. A couple months ago I had surgery to get a better biopsy and it was found I have the mutation that makes me a candidate for TARCEVA. I took my last pill out of the 2nd month bottle last night, so I have not been on it long. Yesterday I met with my oncologist and we compared my December (pre-Tarceva) CAT scan to a scan taken last week with me being on Tarceva less than two months. The results were amazing. The doctor estimated that the Tarceva has reduced my cancer by about 85%. Hopefully it continued to reduce, or at east hold my cancer back. I do have a rash, luckily it is not extremely severe. A little powder to cover the redness and I'm good. I do have extremely dry skin and I itch. I pamper myself by soaking in baking soda or oatmeal baths then use a lot of lotion for the dryness. So far it is manageable, and it is working, so it is worth it. Quote Link to comment Share on other sites More sharing options...
Bandit1776 Posted March 13, 2014 Author Share Posted March 13, 2014 Kellie, Thank you for the note. I also was diagnosed last March with stage IV lung cancer. I went through 10 months of chemo infusions of Cisplatin and Taxol. I didn't have too many side effects from that except loss of appetite, fatigue and I got chemo induced neuropathy, of which I still have in my feet. I will be starting on 150mg of Tarceva next Tuesday. I am still a bit nervous of the rash side effect, but you and everybody else I have dealt with here on Lungevity have definitely helped put my mind at ease a bit. I guess it is just the unknown I am afraid of. Most everybody does say if I develop the rash, it should be quite manageable. I'm just hoping I can still lead a somewhat normal lifestyle and that my quality of life won't be lessened. I'm not sure of what creams/ointments I should use to help with the itch and burning of the rash. I guess it will just be trial and error. I noticed you mentioned oatmeal bath? What exactly did you use for that? That does sound like a nice relaxing thing to do for a special treat. Did it help with the rash at all? Again, thank you so much for your note, as it did make me feel better. What dosage of Tarceva are you on? I was hoping my oncologist would have started me at a lower dose. NOT!! I was glad to hear of your success rate on the shrinkage of the tumor. That is awesome. Keep up the good work and stay strong. Keep in touch and I will do the same. Cindy Quote Link to comment Share on other sites More sharing options...
Kellie Posted March 14, 2014 Share Posted March 14, 2014 Hi Cindy, I take a 150 dose of Tarceva every night at bed time. I did have some stomach upset the first week, but it was not real bad, just odd. I joked that I had an alien in my belly as it was making funny noises, but after the first week it went away. I also had radiation right at the beginning of my diagnosis, followed by traditional chemo. The chemo made me so sick that I was hospitalized three times, put on IV antibiotic, my kidneys were damaged, and had to have blood transfusions. I lost 30 pounds and was nearly bed ridden for the majority of September thru November. The doctor had run out of things to try and I was done with chemo. I had no quality of life and refused to even see my friends because I was afraid I would vomit on or near them. In the three months I had no chemo treatments my cancer spread. It was only going to be a short amount of time before I lost the fight. So when Tarceva became an option I jumped on it. The paperwork and warning labels are very scary, but no more so than regular chemo. Now on Tarceva I have my life back. I'm still not 100%, it will take a while to get my strength and energy back. But I am eating, going out with friends, going on daily walks and even started horse back riding again. I can clean my house and help my amazing husband who took such great care of me when I was sick. There are pictures of me in my introduction thread on my first girls night out since getting my diagnosis, bald head and all. I know I am very lucky that my Tarceva rash is mild and the itching and dry skin it manageable AND that my initial results are so good. I know some people get it much worse. I hope it will continue to work for me, I feel like it has given me a second chance at life. I'll be thinking about you and your journey and hope it goes well. Quote Link to comment Share on other sites More sharing options...
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