Peggy H Posted March 13, 2003 Share Posted March 13, 2003 My younger sister was diagnosed with Stage IV NSCLC Adenocarcinoma in April of 2001 at age 47. She was not a smoker - not that it matters. She is in her fourth chemo series, she always has some positive response to chemo but doesn't stabilize long. She's had: 1 - taxol & carboplatin 2 - taxotere & gemzar 3 - navelbine 4 - navelbine & carboplatin (currently) She also had mets to the brain, treated with gamma knife surgery (a true miracle of modern medicine) followed by one month of whole brain radiation. No recurrence going on 18 months. Expanded access program for Iressa was a disaster. She's been told more than once to get her affairs in order. Last November she was told the spread was so extensive she should immediately make arrangements for her children. She has had more medical & physical complications than I care to remember. Her current chemo significantly reduced tumor # & size. She is a single mom with 2 little girls & currently working FULL TIME as a middle school teacher! I am always searching for new, non-toxic, targeted therapies, which is where I think our advocacy should focus. I don't believe that poison is the long term solution for lung cancer. There are just so few options available now, it is very frustrating. I feel that effective treatment for LC as a chronic disease is just around the corner, just down the road . . . I get my best information from stock market sites, especially those that report on biotechnology companies. They seem to be the first with news of new drugs & clinical trials. Much, much, better & more current information than NCI site or other "official" cancer sites. Here's my favorite: http://www.biospace.com/ just go there and do a search for "lung cancer." You have to wade through the information on CEOs & quarterly reports, but the drug information is fabulous. Plus, you get links directly to drug companies. I've frequently called drug companies directly to ask about new drugs & clincial trials. They are usually very responsive. This is a wonderful site. My sister has actively resisted any support group-type association, but I'm going to see if I can get her here. I so want her to know that 1. There is hope, and 2. She is not the only one. Thanks.[/i] Quote Link to comment Share on other sites More sharing options...
Debaroo Posted March 13, 2003 Share Posted March 13, 2003 Peggy, although it is sad that you needed it, I am very happy to welcome you to this wonderful site. Support, advice, and knowledge are plentyful here. That being said, you mentioned the Iressa expanded access program was a disaster, was it that your sister couldn't get approved? As far as trying other types of treatment, you may want to look into macrobiotic dieting. I don't know if your sister would be up for this drastic of a change in her diet, but maybe even making SOME changes in her diet would help. There is a website called ONEPEACEFULWORLD.COM, that has some pretty impressive stories about people being very ill, one woman was receiving hospice care, she had SSLC-changed to a macrobiotic diet-and still going strong after over 8 years! My grandfather has a friend that was in his 70's, he has-I believe it was prostate cancer-that had spread EVERYWHERE-he was given three months. His wife said "The hell with that", completely did a dietary makeover-all natural-she shopped at a store here in NY called Trader Joes-they are an all natural grocery store. And he is still going strong over 7 years later! They moved to FLA to enjoy the sun about 5 years ago. My point, and I do have one, is that there are some changes that, in conjunction with medical treatment (chemo, etc) I believe help boost a person's immune system and help the body and the chemo-or whatever other medical treatment being used-to work. Take care, and keep us posted, Deb Quote Link to comment Share on other sites More sharing options...
Guest Posted March 13, 2003 Share Posted March 13, 2003 Debaroo - thanks for your post. Iressa was a disaster because my sister's cancer quadrupled & spread everywhere while she was on it. I just don't think my sister is the type who would ever believe in alternative or complimentary therapy. She is very much the type who would believe in medicine - thus my search for vaccines, monoclonal antibodies, EGFR, VGFR, etc. Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 13, 2003 Share Posted March 13, 2003 Peggy - No real answers on alternative stuff for you, but I wish you and your sister the best of luck! SandyS Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted March 14, 2003 Share Posted March 14, 2003 Peggy, Just wanted to welcome you here, and thank you for the information. I will have to go check that out. Unfortunately I don't know much about NSCLC as my mom has SCLC. Just wanted to give you my support and let you know I will keep your sister in my prayers. God bless her for being a single mom and teaching and getting treated for LC!!!!! Wow!!!!!!!! She's one amazing woman and I would think she's a real survivor!!!!!!!! And you are a wonderful sister for helping her like this. Quote Link to comment Share on other sites More sharing options...
gail Posted March 14, 2003 Share Posted March 14, 2003 Peggy, welcome. My sisters were and still are a vital part of my living through cancer. I cannot begin to name all the things they've done for me. Hope to talk to your sister sometime soon. I'm a teacher too! Quote Link to comment Share on other sites More sharing options...
David P Posted March 14, 2003 Share Posted March 14, 2003 Peggy. Again, let me offer my welcome to you and your sister. Lil' sis sure sounds like one tough cookie, and you sound like one heck of a big sister!! You are to be commended on your level of activism with regards to the research on lung cancer. Seems like full time work; but then, what wouldn't one do for a loved one in need? It shows in your post that you have much experience in the role of care giver. Thank you for the drug website, I'm sure it will help many people. Let your sister know that I'm a 46 year old middle school teacher that has been around for 26 years since my diagnosis and left pneumonectomy in 1977. I have two daughters, and I couldn't imagine what your sister goes through every time she's told to "get things in order". Please Peggy, when you see your sister next, give her ONE BIG, HUGE, LONG, HUG from all of us here, and try to get her to at least read some of the messages on this,the best LC board on the net. I went through my ordeal entirely without any support, besides my immediate family, and would have given anything to have had the love and support from all these fantastic, knowledgeable people on this message board. Tell your sister she can contact me any time she may wish to talk. So long for now, David P. Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 15, 2003 Share Posted March 15, 2003 Dear Peggy, I read you Private Message to me before accessing this board, so you answered some of my questions in your well-written introduction of yourself and your sister. Thanks again for the web site...very useful. Please be welcome and visit often...your research could touch many lives here and perhaps we can offer moral support and encouragement for you and sis...or maybe you guys can offer them to US as you both sound pretty amazing. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 15, 2003 Share Posted March 15, 2003 Peggy, you and your sister are most welcome here. Best to you. Don Quote Link to comment Share on other sites More sharing options...
Guest libby Posted March 23, 2003 Share Posted March 23, 2003 Peggy How long was your sister on Iressa. It is frightening to hear her cancer spread while on it. My husband is going into a trial for Tarceva, closely related to Iress. Libby husband just diagnosed with nsmlc, trying to decide on treatment options Quote Link to comment Share on other sites More sharing options...
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