Maddie53 Posted July 10, 2009 Share Posted July 10, 2009 Hi my name is Maddie and I am 53 and have stage 4 BAC. I have been through 2 rounds of chemo and 2 months of radiation. They now told me my options are to do nothing or to try Tarceva. For now I`m not doing any treatment at all. For now the cancer is contained in my lungs, both of them. I keep looking to try to find a clinical trial that seems worthwhile, my fear is I don`t want to be made really sick for no reason. If anyone has Bac I would love to hear from you and any advice you can offer. Quote Link to comment Share on other sites More sharing options...
Patti B Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie- Welcome to the forum. Hope you will find this site helpful to you. I do not have BAC, I have non-small cell, but I am also Stage 4. Hope you realize that there is much hope these days with LC, and please do not listen to statistics. Please keep us posted on how you are doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted July 10, 2009 Share Posted July 10, 2009 Welcome, Maddie, My suggestion would be to read up on Tarceva and step toward that option. If you do nothing, the cancer will spread, no matter what. Contained is not cured. Many people on the board have had good luck with Tarceva slowing the advancement of their disease. Good luck to you, Becky Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 10, 2009 Share Posted July 10, 2009 Hi, Maddie, welcome to the group. If you haven't already, may I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie, welcome. Sorry you have to be here. Wish I could help you with BAC. I agree with Becky though, I do know a lot of people here have had their progression slowed for quite some time with Tarceva. I also agree with Ned, check out cancergrace.org where the oncs will answer your questions withint 24 hours. It's free and they are very candid. You also might find a survivor there with BAC. Good luck and keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
barbvh Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie, Welcome to the forum. I can't help wit BAC info, but echo NED's suggestion to vist CancerGrace.org. Dr West is an expert in BAC. You can post questioms there and he or one othe their other exceptional docs will answer. Good Luck:) Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie. Welcome aboard. I have Stage 4 'adenocarcinoma with BAC features'. Early on, before I knew anything about BAC or that I had BAC features, I opted for no chemo or lung radiation. My reason was that, no matter how long I was going to survive, the median difference in length of survival between those doing everything and those doing nothing was, in my opinion, trivial (like under two months). That was 18 months ago. Some BAC cases are 'indolent', i.e. slow-growing, and it seems that's my case. And it turns out that those are just the cases that are least responsive to chemo (since chemo goes after fast-dividing cells), so it looks like I made the right choice even aside from the trivial difference in survival that I based my decision on. I suspect that's why your onc suggested Tarceva or nothing -- Tarceva doesn't work like ordinary chemo drugs. (Not all BAC cases are indolent, which may be why your onc started you on conventional chemo. I don't think they can tell at the outset which BAC case is more indolent and which is more aggressive.) You are fortunate in that your cancer is confined to the lungs. I already had mets to the lymph nodes and bones at dx, which is why it's adenocarcinoma with BAC features and not pure BAC, since pure BAC isn't supposed to metastasize outside of the lungs. And indeed the cancer in my bones has been spreading consistently and significantly since dx. Btw, the main onc on cancergrace.org, Dr. West, happens to know a lot about BAC -- I heartily second (third?) Ned and Judy's advice to check out that website. Ellen Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 10, 2009 Share Posted July 10, 2009 Welcome Maddie. Glad you found us. Above our members have given you great advise. Dr. West is a great source of knowledge and is so willing to help. Keep us posted on how you are doing. Donna G Quote Link to comment Share on other sites More sharing options...
jstdzy Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie, Welcome aboard. I caught that you said you didn't want to be sick for no reason. Cancer and cancer drugs are funny, they seem to react differantly in all of us. Which means a drug that would make me deathly ill might have no effect on you. Just a thought! Dana Quote Link to comment Share on other sites More sharing options...
fillise Posted July 10, 2009 Share Posted July 10, 2009 Hi Madie! I can't agree enough that a vicit to Cancergrace.org would be helpful. Glad you found us. The people on this board are tremendous and willing to share all experiences and information. Susan Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie, I don't have any advice, I just wanted to welcome you to this warm, wonderful and supportive group. I wish you didn't have to be here, but glad you found this site. It's a wonderful place to find info, support, a place to vent, and a group the just simply understands, no matter what. I will keep you in my prayers. Carleen Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie, I have Stage IV BAC, was diagnosed in May of 2002. Not sure why your options are only Tarceva because I had numerous chemo (few side effects as well) treatments and good success with all of them but (see my profile) one. Also being pro-active has kept my (prognoses 2 years) cancer stable since Dec06. I would encourage you to get a second or third opinion and not settle for there is no options or hope. Feel free to PM me any time if I can be of help. Rich Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 10, 2009 Share Posted July 10, 2009 Hi Maddie and welcome to this site. I don't have BAC but hopefully others will come along soon. So sorry for your need to be here but you will find it a great place of support and information if you stick around. Please keep us posted on how you are doing, we care here and have walked in your shoes. Sandra Quote Link to comment Share on other sites More sharing options...
Katy66 Posted July 10, 2009 Share Posted July 10, 2009 Welcome Maddie. None of us want to be here but it is a great place to gain the support and information we all need. I'm not familiar with BAC but wish you well with whatever treatment or non treatment you decide on. Quote Link to comment Share on other sites More sharing options...
Maddie53 Posted July 11, 2009 Author Share Posted July 11, 2009 I wanted to thank everyone so much for the advice and warm welcome. I will go to the site you reccomended, and I will also give Tarceva a second look. I will be going to Texas next month for a scan and will be able to see then if the cancer has grown. I am so glad I found this site! Thank you all again and I will appreciate any new information. Maddie Quote Link to comment Share on other sites More sharing options...
Caren Posted July 11, 2009 Share Posted July 11, 2009 Hi Maddie I just wanted to welcome you to the forums and echo all the advice that has already been given to you. Quote Link to comment Share on other sites More sharing options...
LovesLife Posted July 16, 2009 Share Posted July 16, 2009 Maddie - sorry I am so late on welcoming you to the group. I have a friend who has Stage IV BAC who was on Tarceva for a couple of years - she had fairly minimal side effects and it worked wonderfully for her. She is now on chemo and doing a clinical trial. She has a blog which she has been keeping since the beginning of her journey and if you want the address just PM me and I will send it to you. She is an amazing lady and will lift your spirits. Please know there is definitely hope (just read Rich's story!!!) and you are not alone. Please keep us posted. Linda Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 16, 2009 Share Posted July 16, 2009 Hi Maddie and a belated welcome to this group. I am glad to see you reconsidering Tarceva. There are side effects but they can be managed and compared to some other chemotherapies is quite manageable. Some members here have successfully been on Tarceva for years. And it is also easy to tell fairly quickly if it is working. So minimal risks and side effects as far as I am concerned. I was on it for awhile. Best wishes with your decision. Sandra Quote Link to comment Share on other sites More sharing options...
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