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Cheryl Z
Posts: 36
Joined: Mar 2009

I am new to this discussion board although not new to this site. Last year my husband had colon cancer. He had surgery, chemo and radiation. He seems to be doing well in that respect but they have now found a spot on his lung. The doctor does not seem to think it metasticised from the colon because that doesn't happen very often. The doctor is concerned that this is bronchoalveolar (sp) which is a slow growing cancer. This type of cancer does not always light up on the pet scan. He is being referred to a thoracic surgeon. Can anyone tell me anything about this type of cancer.

Posts: 1048
Joined: Aug 2006

The pathologist thought my lung cancer spot was BAC, well, at least mostly that. It grows very very slowly and rarely leaves the lung. They told me I would have to ignore it for a long long time for it to start metasticizing. If it is caught early, like in stage 1 A before the spot has grown more than a centimeter, surgery to remove the lobe it is in is sometimes curative. That's the good news. The bad news is that because it grows so slowly the usual kinds of chemo don't work very well. That's sort of good news because that means that you don't have to do the aggressive chemos. They have a targeted kind of chemo that has few side effects (like a rash) that sometimes works on it if it starts creating problems, but it only works with certain genetic situations which are more common in Oriental populations and I'm not Oriental. The other bad news is that it often shows up in either lung in kind of a shot gun pattern. So if the original surgery is not curative, you may need more surgery. That ouches just to think about it.

It is important to see a great thoracic specialist. If they can do VATS surgery, it is much easier on a body. Recovery is way faster and the results in finding out what kind of cancer it is are equal to regular surgery. Definately take the time to explore your surgery options. BAC cancer grows slowly. While you don't want to ignore it for weeks and weeks, you don't have to rush into surgery by next Friday. Take a week or two to make appointments and talk things over with an expert. And try to find a specialist that can do VATS surgery. Good luck!

Posts: 1
Joined: Jun 2010

SO GOOD to finally find "something" about this kind of cancer. i was diagnosed last year, found by accident, and shocked that it affects oriental women....after some thinking about that and being a blonde, i realized that my mother was 1/4 cherokee indian....so that has to be from where the "oriental" came, and it is genetic.....

my history. my cancer was discovered by total accient. i had bacterial pneumonia, got well, lungs perfect. i wanted to be sure since bacterial pneumonia is a killer. i took my x-rays to the cleveland clinic here in florida to a pulmonary specialist. he agreed that i have perfect lungs, but went one step further to test. sometimes a pocket of pneumonia that cannot be see via x-ray does not heal and pops up later in life when in the hospital very often. he found a spot....further and further test all the way still could not confirm what it was...i had surgery to remove it, it was bronchoaveolar, it was removed and it's unlikely it will return...............however, on the left side of the lung is the shot gun scattering. this shotgun scatterng is a totally different gene than the left side....but the same as far as affecting females of asian origin. too, it's the same kind of cancer that affects the brain. mixed in with the scattering was a minute spot that was removed in january. no further cancer can be detected with current technology. however, the scattering can become cancerous. i went through three months of chemo as a preventative. mid-way through the chemo, my onocologist suggested the drug, TARCEVA. the only information that i can find on this drug is that it's prescribed for terminally ill patients and has a 6.7 month lifespan....on april 19, the FDA approved this drug for maintenance, but you have to take it for life. i find no information about this. and, i can't find a chatroom for just lung cancer.

in the meantime, i'm doing through a second opinion. the second opinion onocologist is the one who told me i had two sets of genes for lung cancer. he told me that while the chemo had done some good on the pre-existing shotgun scattering, a few new ones showed up....he read all my tests. however,the last one on friday looked much better...the last PET....i now have appoints with my onocologist on july 17, and on the 20th with the 2nd opoinon onocologist. after these results, i'll have to make a serious decision...i think. it takes several months for the chemo to do additional work after it's finishd.

that's my story, and if anybody can shed any light on this drug, tarceva, i'd appreciate hearing from you....thanks

stayingcalm's picture
Posts: 654
Joined: Feb 2007

I really think if you used the search box you would find quite a lot about Tarceva, it's been around a while and a lot of lung cancer patients are using it. It's what's called a tyrosine kinase inhibitor, and basically, well it cuts off the food supply to the cancer cells. More or less. It was among the first of the "targeted" drugs, and there are now many more in the pipelines just waiting for clinical trials.

I've been on Tarceva over a year. It's a pill, it comes in 75mg, or 100mg, or 150mg (and maybe other dosages by now, not sure), most people take it once a day. I take 100mg for three days in a row, then break for a day, then back to three days in a row, and so on. It causes a rash, sometimes, and occasional diarrhea, and fatigue, grows your eyelashes very long and makes your skin very dry. It has put me into remission, so I love it to death!

Posts: 5
Joined: Mar 2013

I've been looking for a site where others who have  had this disease cantell me about it.  I have a very suspicious spot on my LUL.  Apparently it's been there for over 6 years but now it has grown and I just  had another CT scan.  Have to wait two weeks to see pulmonologist to find out what is next.  He mentioned a bronchoscopy.  Does t hat hurt?  I don't like pain.  I see the posts on this site are from 2010.  Is there anyone out there  who has more recent experiences?

Posts: 844
Joined: Mar 2011

Some of the better ones are cancergrace.org (monitored by oncologists), lungevity.org and inspire.com.  

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