dadstimeon Posted July 15, 2003 Posted July 15, 2003 Hi - First Time On - I Have Non-Small Cell Incurable/Inoperable Stage IV (Bronchioalveolar Adenocarcinoma) Lung Cancer - Matastasis To Adrenal Glands - Non Smoker – 50 Years Old - Diagnosed in May, 2002 - Started Gemzar and Carboplatin (9 Rounds) in Dec, 2002 - Started Taxol (15 Rounds) In June, 2003 - Some Tumors Get Bigger, Some Tumors Get Smaller, None Have Gone Away - Told This Is Not Survivable - 2 To 3 Years Life Expectancy - Very Fatigued And Tired All The Time. Anyone Out There With This Type Of Cancer Or Knows Someone I Would Be Most Grateful To Hear From – I Live In The Greater Boston Area - Thanks Rich Quote
Don Wood Posted July 15, 2003 Posted July 15, 2003 Welcome to the Message Board, Rich. Sorry at your prognosis, but, as you will find here, there are many survivors of various stages. Doctors speak from statistics, which are averages, and each person is an individual. I wish you the best. Much info and support here. Don Quote
marta Posted July 15, 2003 Posted July 15, 2003 Hey Rich, I'm sorry to hear of your diagnosis. My mom also has stage IV LC. However, it seems like you've gotten through treatment...and your still here!!!! There is much support here, so stay with us and keep us updated. I'm also in the boston area...where are you being treated? I work at Brigham and Women's/Dana Farber Cancer Institute. There is a trial starting up for a lung cancer vaccine that had really good results...in fact..it worked the best for people with your kind of cancer (BAC). A few people actually had a complete response..meaning NO TUMORS....and were still cancer free at two years. It should be enrolling in the next few months. Please PM me..or write me an email lhoffmeister@partners.org Good luck to you Laura Quote
Fay A. Posted July 15, 2003 Posted July 15, 2003 Hello, Rich, My Name is Fay A., and though my tumors are mixed Adenocarcinoma with Bronchioloalveolar Features (BAC), there's enough BAC there to make things interesting. Have you been evaluated by an Oncologist who specializes in Lung Cancer? BAC is too strange a disease to be dealt with by a general oncologist (my opinion), unless that Oncologist is communicating with a Lung Cancer Specialist who has evaluted you-in person. I'm stage IV, but I just had my lung removed, so I guess I'm in a surgical remission. (The cancer was confined to the right lung and some nodes in the center of my chest.) How did your Oncs arrive at the Stage IV...do you have tumor in all lobes of one lung, tumor in both lungs, lymph nodes? Where did they say the Mets from the cancer are? I ask these questions because this information can determine the type of treatment you receive. Have you been offered information on clinical trials for those who have BAC? There are drugs ( Epidermal Growth Factor Receptor Inhibitors) called Iressa-which has FDA approval, and Tarceva-which is still in clinical trials- that are showing themselves to be effective in some cases of NSCLC, especially in Bronchioloalveolar Carcinoma. You need to check into these things. The one thing I've learned over the past 4 years is that the doctors are not necessarily going to tell us about clinical trials, nor are they always up on the latest treatments, like Iressa. Though they should be up on Iressa. There's been enough published about it since it was recently approved by the FDA. There are several of us who have either pure BAC, or mixed tumor types of BAC. Did your Oncologist tell you what type of BAC you have? (Mucinous, non-Mucinous, Solid Nodule, Part Solid or Non Solid Nodule, Diffuse form, Multifocal or Solitary Lesion? You need to know this, because this, too, will affect your treatments. So welcome, though I'm sorry you have had to find us. And have hope that you can turn this into a chronic illness that allows you to live for a very long time, long enough for a cure to be found. I have that hope. Best Wishes, Fay A. Quote
Tiny Posted July 15, 2003 Posted July 15, 2003 Hi Rich, Welcome. My heart turned over when I read your post, but Fay A. has given you some excellent guidelines and advice. I, too, encourage you to work with a lung cancer specialist who has BAC experience, if you are not doing so already. Be sure to go to the NEW RESEARCH/TREATMENT OPTIONS Forum and read the article submitted by John titled "BAC/Tarceva/trastuzumab (Herceptin)". I'm sending you a PM, as well, so look for it. The following URL can be a useful link for people with BAC: http://www.lungcanceronline.org/treatment-nsclc/bac.html This is a great group of positive-thinking people. Quote
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