mustard1 Posted January 20, 2009 Share Posted January 20, 2009 Hi , I am diane and I have BAC and I was wondering how many people on here have that type of cancer or bac mixed. I just thought it would be nice to share stories and see if there is anything different I can do to help this horrible beast go away. So hope to hear from someone. Diane Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted January 21, 2009 Share Posted January 21, 2009 Hello Diane and welcome! I'm sorry you had reason to find a site like this but I am glad you've joined us. There are members here who have been diagnosed with BAC and I am sure that they will be along to share their stories. In the meantime, please feel free to read through the various forums here and don't be afraid to ask any questions you may have. Warmly Christine Quote Link to comment Share on other sites More sharing options...
LovesLife Posted January 21, 2009 Share Posted January 21, 2009 Hi Diane: Welcome to this wonderful site ... I wish you didn't have to be here though. I was diagnosed with non-mucinous solitary BAC in 2006 and had surgery to remove my left lower lobe in June of 2006. When were you diagnosed? I have a post under My Story (was written quite awhile ago) that gives more detail. Also, there is an oncologist that has a web site (Dr. West) who is somewhat of an expert on BAC and he has some postings on his site (www.cancergrace.org) which you can search for. He also is very helpful in answering questions of a more general nature. Many of us here also belong on his site. I know all too well how terrifying the words "you have lung cancer" are and you have found a very good place to share and get information. I look forward to getting to know you. If you have any questions, please don't hesitate to ask. Linda Quote Link to comment Share on other sites More sharing options...
mustard1 Posted January 21, 2009 Author Share Posted January 21, 2009 I am not sure how to use this and to answer people, so I hope this is right. I was dx'd early Nov of 08, had a cough for 3 months, had a chest x-ray in Sept 08, clear, but the cough kept on, so had a ct and it showed signs of more like a pneumonia type not cancer, (that is the bac shows up I heard), so the pulmonary doctor did not treat it as a infection, even though he thought it was, but ordered a broncoscopy and it showed cancer. They then did a pet scan and it light up just on the lower right lobe and that was it, but there was something on the upper right lobe also, showed in the ct, but did not light up (bac usually does not) so they decided to surgery and remove what they could. I had the open one, as if he did the vats he could only get to the lower lobe, so when he went in he removed the lower right lobe, and wedged out 2 nodlules on the upper right lobes. When the path report came back it said that one of the margins on the upper right lobe still had cancer, but all of the other margins were clear and no lymph nodes were affected. They said that I had bac multifocal and surgery would not really help in the future since it had the multifocal specs and they could just stay specs or grow and also they said bac usually is very slow growing. So Nov 18th of 08 is when I had my surgery. I probably will be getting a scan very soon. I still have a cough and my back burns alot and also when I cough or take a deep breath My chest hurts still... I try and do deep breathing, but not as much as I should. I go back to work end of this month. My cancer doctor said they would just watch and wait and if any changes would put me on the tarceva pill .. which I am dreading. I am always anxious and have no ambition since this has happened and I feel alone and scared. So far that is my story. I am going crazy with the diet thing. I dont know what to eat , what not to.. I have been on so many sites and one says this is good for you and the next one says it is not. I miss my food. Are any of you on any special diet and do you think it helps with the cancer. Thanks for welcoming me, and like you said it is to bad I had to find this site or any cancer site. diane Quote Link to comment Share on other sites More sharing options...
Joe B Posted January 21, 2009 Share Posted January 21, 2009 Hi Diane, I was diagosed with BAC in October of 2003. It is slower growing usually and has a better prognosis than other types of Lung Cancer. It is considered a subtype of Adenocarcinoma; and it is less likely associated with smoking. (I am a never smoker) Rich also has BAC as as well as others here. I am enrolled in a trial called the HyperAcute Lung Cancer trial (At the NIH in Bethesda, MD) Under Dr John Morris. They do accept BAC patients. Its a vaccine, so it trains the immune system and there are no side effects. Please look into it. Send me a private message if you need more information. Joe B Quote Link to comment Share on other sites More sharing options...
mustard1 Posted January 21, 2009 Author Share Posted January 21, 2009 Hi and thanks for the message, I was just wondering, I was told that bac usually does not spread outside the lungs, so I was surprised to hear you ended up with a brain tumor, I am glad that they got it all. Also that chemo does not usually work on this type of cancer. So now I am confused. It seems you have been thru alot, but I am so glad it seems to have turned out ok. I have aarp medicare complete HMO and it does allow for any type of trials I dont think. I have never heard of this vacine, I am so glad it is helping you. How long do you have to stay on it and its great no side effects. Have you been able to work thru this ? please tell me more about this trial and anything else that you think might help me. I am scared... its great that you have a family. I am all alone. My daughter lives far away, my one son does too, my older one works 6 days a week till 8pm, they own three bike shops, so with his own home, he does the best he can, but he lives over a hour away and there never seems to be much time. My whole life has changed and my outlook too... I just feel dead inside. Would love to hear back from you. Thanks so much for the email. My reg. email is dmaas22913@aol.com. thanks diane Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 21, 2009 Share Posted January 21, 2009 Hi Diane. Welcome to the place no one wanted to be... I have adenocarcinoma with bac features. Unlike (most) pure BAC, mine has metastasized to the bones, lymph nodes, and a salivary gland. But like (most) pure BAC, mine seems rather 'indolent', i.e. slow-growing. I was diagnosed in December 2007 and have not done any chemo or radiation (except rx to some bone mets). And I feel fine. Subject to change without notice, to be sure, but it's good while it lasts. Btw, I believe the reason (most) BAC doesn't respond very well to chemo is that chemo works by killing fast-growing cells (which is why it kills hair) but, if the cancer is very slow-growing, the chemo doesn't select and kill it. I didn't know that when I refused chemo -- guess I was just lucky. Hang in there. NOBODY knows how much time they have left but lung cancer has the virtue of reminding us to make the most of the time we have. Ellen Quote Link to comment Share on other sites More sharing options...
mustard1 Posted January 21, 2009 Author Share Posted January 21, 2009 Well have they asked you to try the tarceva pill? As long as your doing ok, I guess you are making the right decisions. Dr West says sometimes you can overtreat bac, which leads to worse results. I have to get over this non acceptance so I can live my life again, but its sooooo hard. Are you doing alright? diane Quote Link to comment Share on other sites More sharing options...
Ellen in PA Posted January 21, 2009 Share Posted January 21, 2009 Hi Diane. Re Tarceva, that was one of the possibilities my oncologist suggested early on but she assured me it, like ordinary chemo, was purely palliative at my cancer stage (4), so I asked her what symptoms she thought I had that needed 'palliating' -- I had no symptoms -- and she said 'You have a point.' I've since agreed to monthly infusions of Zometa, which is a bone strengthener, not a chemo, in order to try to avoid fractures to bones weakened by metastases, but that's the only treatment I do. And it has no side effects (that I've noticed). Oh yeah, and twice daily injections of Lovenox, to prevent clots and pulmonary embolisms. As for how I'm doing, I'm doing ok. Certainly not as energetic as I once was and I've pretty much given up long-distance traveling (which I used to do a lot of), but my breathing is still fine, no cough, no pain, and I still gain weight the minute I go off my diet. One thing that has helped me enormously in dealing with the emotional part is that I already had a long-standing patient-doctor relationship with a great psychotherapist and talking with him about all of this has been enormously valuable. Hang in there and good luck. Ellen Quote Link to comment Share on other sites More sharing options...
recce101 Posted January 21, 2009 Share Posted January 21, 2009 Hi, Diane. I was going to suggest that you visit cancergrace.org and perhaps post a question for Dr. West, but I see you've already been to the site. I didn't see your username there, so I'm guessing that you either registered with a different username or you haven't registered to ask a question yet. He's definitely the best source on BAC and a terrific guy. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
mustard1 Posted January 21, 2009 Author Share Posted January 21, 2009 Yes I sign up for these sites and then cannot remember how to get on them. I had not a clue that my name here was mustard, how I came up with that is strange... Magazine2 is what I usually use. I am just always anxious and just cant seem to get over it. The scan thing has me really anxiouos as it will be my first one. I just read about all of the things everyone goes through and it breaks my heart and I am scared how I will be when I have to start doing treatment. I have to work and dont know how it is possible to work and go through all of this when you are getting tratment as I am alone. All of you are so nice and I am so glad I have this site to go to. diane Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 21, 2009 Share Posted January 21, 2009 Hi Diane, I'm at StageIV and have BAC. Was diagnosed May 2002. Not sure why you were told chemo does not usually work for BAC, if you read my profile I had very good success with all my chemos but one-- you might want to revisit that with your oncologists. It's understandable how you feel. Please feel free to PM me if you have any questions or need someone to talk to, no need to go it alone. Welcome to the site and glad you found us. Prayers for the best. Rich Quote Link to comment Share on other sites More sharing options...
mustard1 Posted January 21, 2009 Author Share Posted January 21, 2009 Nice to meet you. Well I am not to that stage yet I guess, I have or did at surgery time all clear margins, except the one where he wedged out one of the right upper lobes and the margin had some cancer at the cauthization site, no lymph node problem, all clear, mine is multifocal, is yours? They usually dont have much luck with chemo, you are one of the lucky ones. He said since mine was not really big that sometimes chemo can actually make it worse, cause it destroys the good cells too and I am at the point he said where he thinks its better to watch. And then if any growth that is meaningful, start on the pill, which he really is hoping I dont have to do. Did you start at stage IV, where was your cancer when you were first dx'd? and how big were your tumors. Mine in the lower right lobe was 2.8 and the 2 in the upper right lobe were very small. diane Quote Link to comment Share on other sites More sharing options...
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