Just one question...in regards to DBerry's post

[Dollfan19]

Who is working on the cure for lung cancer? Where do we all go to make the difference? Where do they get their financial backing? From what I've read, there is little research done and not many changes have been made over the years regarding treatment. HIV/AIDS patients get more $$, and that disease can be prevented for the most part.

I promised my husband that one day I would find a way to make a difference, I guess now is a good time to start.

Abby

[ginnyde]

Abby,

I am not sure where this site will eventually end up, but right now I try to contribute to LCSC, especially when one of our members dies.

I think as we grow and as our survivors and care givers get more active, we can turn LCSC into the equivalent of the Susan B. Komen breast cancer advocacy but for lung cancer.

Obviously, this site provides the caring, support and knowledge that we all need, that is first and foremost.

But why can't we become the major lung cancer fund raising organization?

What do other members think?

Ginny

[Guest Deb]

Abby,

I to wonder "who" is working on a cure for lung cancer. I really don't think anyone is trying to "cure" lung cancer, I think "they" are just trying to treat cancer with drugs. It seems that blaming smokers is another favorite way to sidestep the issue of "cure", that is the cure to not smoke. From everything I have read about lung cancer it seems "they" gave up on it a long time ago.

Deb

[Snowflake]

Abby,

VERY GOOD questions! Diving right in is the BEST way to figure out what a problem is and how to begin to solve it...

If you remember the late 80s and the AIDS epidemic, you'll remember the whole "Gay Man's Disease" that spread...and spread....and gee, WOMEN are getting it (but the explanation was having a husband that "swung both ways")....and whoa, CHILDREN are getting it (explanation - hemophiliacs, poor dears, blood transfusions from those promiscuous gay men - Lord knows, media coverage of any "fringe" paints 'em bad)....ohhhhh, FAMOUS people can die of AIDS...and children (remember Ryan White?) dying of the disease are getting audience in governmental houses... Wait, maybe we should take a step back and STUDY this... When AIDS went from a gay man's disease ("they" must have been "asking for it", ya know, with that lifestyle and all...) to a national problem, far more time and money was spent researching "cures" or treatments...

I believe the same is true of lung cancer. It NEEDS to be separated from the whole "not smoking prevents lung cancer" because that is a common misconception that just ain't nowhere near true! I'm not sure exactly what needs to be done to get that recognition, but I DO know that just pissin' and moanin' about it will do NOTHING to make that happen. Right now, it appears, we're all waiting in a holding pattern for the next move that we should make en masse - I hope there's a sign soon!

...as for giving up on research, I don't believe that for a minute. If "they" had given up on research, John and Hebbie (Heather) would have NOTHING to post, Dadstimeon (Rich) wouldn't have news articles to post, new items would NOT be popping up everywhere. There is still Hope here, there just needs to be national recognition of this epidemic, of the fact that NON-SMOKERS can contract this damn disease and that smokers aren't asking for it any more than non-smokers are. Smoking IS bad for your health, that's proven...smoking is NOT the only cause for lung cancer. If it were, ALL smokers (not just a small percentage) would have lung cancer and NO ONE who didn't smoke would catch it - it's NOT a blood-borne disease, it's not contagious by touch, and it's not getting the attention it needs.

Must be time to break out the kitchen pots and wooden spoons and start up a clatter that can be heard all the way to Washington, D.C., and not quiet down until we are heard and something is done. Write your congressman, GeeDoubleYa, news stations, local papers, regional papers, magazines....

Don't give up, we just need to organize (we are there, don't ya think?) and decide on a united front in the best area/s... Any suggestions?

Becky

PS Don't forget to take care of you. You are going through some very deep feelings and may need a little "assistance". Please seek that out if needed, it's not failing to ask for help.

[Fay A.]

Just sent this to the reporter who mentioned Katie and Lung Cancer Support Community in his article on the cancellation of Arbor Daze:

Dear Mr. Ramirez,

I'm writing to let you know that just over a thousand folks-most of whom live outside of Texas-read your article on the cancellation of the Arbor Daze festival. We had a vested interest in the Festival being successful. See, our friend, Kate Brown, set up a booth to provide information on Lung Cancer, and to do a little fundraising for our Lung Cancer Support group. She did the greatest part of the job alone. Our membership is spread out across the North American continent, but we have members from Europe and South American, India, and elsewhere.

You fell into the makings of a great story, Mr. Ramirez, if you will make the time to look a bit deeper into what Kate and her husband Rick are doing at www.lchelp (with the help of a thousand or so "friends").

We recently lost one of our members, Becky Goforth (we called her Beckyg). She was 31 years old, a college math professor, Mother to toddler, Katie, and wife to Curtis. Becky was from Nacogdoches, Texas, and not only was she a life long NEVER smoker, she also had no other known carcinogenic exposures. She was diagnosed with late stage Lung Cancer because no one is looking for lung cancer in nonsmoking people.....and THEY SHOULD BE LOOKING, because it's there. According to the American Cancer Society, over half of those diagnosed with Lung Cancer this year will be former smokers and those who have never smoked.

We are trying to change the way that Society views Lung Cancer. We fight the disease process, we fight the stigma of having a disease that Society believes we brought upon ourselves and therefore deserve. The demographics for Lung Cancer is changing, and no one is "safe". There is a form of Lung Cancer called Bronchioloalveolar Carcinoma (AKA BAC) that is not considered a smoking related Lung Cancer, and the incidence rate is on the rise.

Please take the time to visit the site...and get to know the folks. We need a voice, Mr. Ramirez. Someone who will take the time to do the research, and not just parrot back what has already been written about Lung Cancer and Smoking. We need your voice, Mr. Ramirez, someone to speak for us when we lose our own.

Sincerely,

Fay Aguilar, 49 years old, Almost 5 year survivor, Adenocarcinoma with Bronchioloalveolar Features, Stage IV.

Won't know if he'll do anything unless we ask....

[ginnyde]

Boy, Fay, if I ever go back to school and take a writing course, I want you to write my term paper. You have an amazing talent and I am so glad you are here to support this cause.

Thank you.

[luvmydog2]

Let's FLOOD Mr Kerry and Mr Bush mail box with this. Maybe, just maybe, since it is election year they might show som interest here. There are 1050 here and if each has a spouse then that is 2100 plus any children and siblings that vote. Is this a good or dumb idea. I am blonde ya know...

[pecola]

Fay, that is a FANTASTIC letter! You have a very powerful way with words. I wish I had read your post before writing him, becuase I may have said too many of the same things...but you know what??? They need to hear the same things over and over and over, until someone finally REALLY listens.

[SharKats]

Is anyone here a member of ALCASE?? I have begun receiving their newsletters and I'm quite impressed. I found out that over $11,000 (Aprox - I don't have the mag in front of me) was spent per breast cancer death, $8,000 (aprox)per prostrate cancer death and about $1,300 per lung cancer death for research and prevention. I was quite upset when I heard the statistics.

ALLCASE's Fall 2003 issue stated that Senator Hagel, a Vietnam vet had sponsored additional language into the Senate Appropriations Committee report on fiscal year 2004 funding for Department of Defense. "The Committee urges the Secretary of Defense in consultation with the Secretary of Veterans Affairs, to begin a multi-institutional lung cancer screening program with centralized imaging review incorporating state of the art image processing and integration of computer assisted diagnostic tools."

'If implemented, such a program would give active and former military service men and women the opportunity to participate in lung cancer screening as part of their medical coverage. This is a particularly important issue because several studies have shown that U.S. military veterans have a higher rate of lung cancer than the non-veteran population.' (I didn't know that). The article also states that exposure to carcinogenic agents such as dioxin, radiation and others are likely contributing factors.

ALCASE send him a letter of thanks and stated how badly lung cancer screening is needed and pointed out that the cost of care for the expected 171,900 new cases of lung cancer to be diagnosed in 2003 would exceed 8.5 billion dollars.

The lung cancer advocacy community needs to follow-up on Senator Hagel's efforts. ALCASE suggested we write, email or call Senator Hagel to thank him for his initiative and ask for his continued efforts on behalf of those living with and at risk for lung cancer and also suggested we contact our own Senators and Representatives to ask for their support on behalf of the lung cancer community.

Senator Chuck Hagel

248 Russell Senate Office Building

Washington, DC 20510

202-224-4224

email: chuck_hagel@hagel.senate.gov

PS. I also bought the lung cancer "crystal ribbons" - they're really pretty and eye-catching and a number of people have asked what they represent. I also purchased some for friends who are wearing them. Every little bit helps.