krmloyd Posted February 16, 2006 Share Posted February 16, 2006 Hello everyone. I just found this board and have not yet browsed everything on this site. However I already can see there is a lot of hope and support here and I think you folks must be pretty awesome to give of yourselves to help others. I don't know how to put in my history yet, so I'll be brief about letting you know where I am in my fight. I was diagnosed with stage IIIB NSCLC, adenocarcinoma Feb. 17, 2005. The primary tumor is in a lymph node, right hilar region and supposedly inoperable. After 6 rounds of Taxol/Carboplatin we saw about 50% shrinkage of my 4 cm tumor. After 37 heavy duty radiation treatments, we saw another 1/2 cm shrinkage. However, since I completed my radiation in October of 2005, we are now seeing the tumor beginning to grow again. I am to start a stage II clinical trial with Tarceva/Digoxin March 1, 2006. I just learned of this latest news on Tuesday this week, and therefore have not yet had time to do much research. If anyone here has experience with Tarceva, I would be ever so grateful for anything you could tell me. I am a bit overwhelmed right now and knowing a little about what I might be able to expect would be a help. I know this probably sounds vain and shallow, but I'm wondering if I'll lose my hair again? It is only now starting to look relatively good again! I am finding conflicting info about this so far. Thanks for being here, and I look forward to getting to know you all! Blessings, Krista - Louisville, KY Quote Link to comment Share on other sites More sharing options...
dakotadog Posted February 16, 2006 Share Posted February 16, 2006 Welcome to the board Krista. I also just found this great group of people a few days ago. Quote Link to comment Share on other sites More sharing options...
Patty Posted February 16, 2006 Share Posted February 16, 2006 Hi Krista, I can't help you with your question about therapy, but did want to welcome you and tell you that I don't think it is vain or shallow to worry about your hair falling out again. I am sure one the great people on this board will be able to give you an answer and don't be afraid to ask your health professionals questions either. Take Care, Patty Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 16, 2006 Share Posted February 16, 2006 Welcome. Looks like you get to celebrate a one year survival anniversary tomorrow! So glad you found us. I did not take Tarceva but many here have so I know you'll get some good info. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted February 16, 2006 Share Posted February 16, 2006 Hi Krista,welcome to our support family.You will find many knowing and caring people here. I have not been on tarceva but there are many on this board that are.Many of them have had very good sucess with it. Quote Link to comment Share on other sites More sharing options...
michelepal Posted February 16, 2006 Share Posted February 16, 2006 Krista, Welcome! I'm sorry you have to be here but it a great place in so many ways. I can't help you with the Tarceva questions but I'm sure at least one of these wonderful people will be able to help you out. Good Luck your in my Prayers! Michele Dad DX 04-01-05 Passed away 11-18-05 Only 66 years old Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 16, 2006 Share Posted February 16, 2006 Hi Krista and welcome to the board. I'm scheduled to start Tarceva next week, and from what I've read, hair loss is not one of the side effects. Hope that's true. Good luck with your treatment and let us know how you're doing. Trish Quote Link to comment Share on other sites More sharing options...
Ry Posted February 16, 2006 Share Posted February 16, 2006 You will not lose your hair on tarceva. My husband was on it for quite some time and it kept his stable until recently. The major problem is a dry skin/rash/acne thing that hopefully you won't get. Welcome to our family here. Rochelle Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted February 16, 2006 Share Posted February 16, 2006 Welcome Krista, Also diarrhea can be a problem as well. Keep in mind one can go down on the dose if problems arise and still be effective. I started on it at 150MG had to drop to 100MG. Did get the rash but went away after a couple of months give or take. Been on it for a year now and have have had very good results with it. Again Welcome. Rich Quote Link to comment Share on other sites More sharing options...
bethluvswill13 Posted February 16, 2006 Share Posted February 16, 2006 Welcome Krista!!! I haven't personally experienced tarceva, but I've heard good things about it. I imagine things work different on each person. I'll be praying for you and Im sure you'll make the best decision for you. Hugs,Beth Oh-also you found a great board with many loving people! Their great! trust me. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 16, 2006 Share Posted February 16, 2006 Welcome, Krista, and congratulations on your one year of survivorship. My wife was diagnosed with Stage IV nsclc and is into her fourth year, so take heart. Don Quote Link to comment Share on other sites More sharing options...
Don M Posted February 16, 2006 Share Posted February 16, 2006 Welcome Krista. I hope the tarceva does the job for you. I am curious about the digoxin part. I took it to regulate my heart beat after surgery and I never heard of it being used for chemo. Don M Quote Link to comment Share on other sites More sharing options...
krmloyd Posted February 16, 2006 Author Share Posted February 16, 2006 Hi everyone and thanks SO MUCH for your feedback! I am happy I found you guys. Don, this is the clinical trial. There is some small indication that Digoxin helps the Tarceva do its job. I could take the Tarceva alone and not do this clinical trial thing, but if I have an opportunity to contribute to research, what the heck? Gotta go now ... more later! Love,K Quote Link to comment Share on other sites More sharing options...
skdgr81 Posted February 17, 2006 Share Posted February 17, 2006 Hello, Just wanted to let you know that u r in my prayers and you and your family have my support as well Big Hugs, Sam Quote Link to comment Share on other sites More sharing options...
bunny Posted February 19, 2006 Share Posted February 19, 2006 my mom has been on Tarceva for a while now, with a break in the middle. hair loss is not one of the side effects - they tend to be a rash, dryness all over the body, and diarhea. we were also told of a possible adverse reaction which, if it were going to occur, would happen in first 4 weeks and would involve signigficant shortness of breath. my mom has a teeny touch of the rash, a little dryness around her finger and toenail beds and that's it. she did have a major problem due to the Tarecva interacting with coumadin. she had a mild stroke, and went off both drugs for a while. now, she's on Tarceva only and is doing well. no idea whether it's doing anything for her cancer, her next scans are in March. oh, and from what we've been told and what I've observed, there is NO correlation between the rash and effectiveness - plenty of people who had horrible rash on Tarceva did not get good results, and vice versa. good luck with it, and keep usp posted! xoxo amie Quote Link to comment Share on other sites More sharing options...
J.C. Posted February 19, 2006 Share Posted February 19, 2006 Welcome Krista, Hope your new treatment works well for you, keep us posted, please. Jackie Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 19, 2006 Share Posted February 19, 2006 Welcome Krista, I am glad you are getting so many responses to your question. I want to wish you good luck with the clincal trial. I pray that does the job for you. Keep us posted. We are always here to give you support and to answer your questions. Also check Bill's post under general (Feb,18th Tarceva-Induced Hepatotoxicity) That seems like good information to have. Good luck! Maryanne Quote Link to comment Share on other sites More sharing options...
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