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My Frustration Continues !!!


Larry

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Well here i go again and i'm certain just about every one else on the board can say pretty much the same thing i'm going to complain about so bear with me and share your thought's after reading.

Here within our small community we've had in the last week 2 Lung Cancer Death's and many more before and these last 2 were brother inlaw's dieing a week apart with one being a small county Sheriff. Now mind you these are only the one's i personally knew.But now my complaint , just yesterday i got my latest edition of the AARP mag and in it a large article on breast cancer. I've recieved other advertisement's and literature all mentioning the need to cure breast cancer and sometime's they even get so bold as to mention prostrate cancer.

I realize that Lung Cancer is not politically correct and the Health Guru's like to remind those that unlike Breast Cancer which one is just basically unfortunate and undeserving to get that Lung Cancer people as a whole brought it on them selve's. I for one have a sisterinlaw who is battling reoccurance of Breast Cancer in her bone's and has been told it is terminal but at this time she is once again in remission. So i'm fully aware of the pain and anquish those who suffer other Cancer types, but what will it take to wake up the average not in my back yard type of American's that it is Lung Cancer that is the deadliest numerically killer of them all, or sadly will it continue like it is and they will only realize it after it is in there own back yard........

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Sorry Larry. Strides ARE being made, but not as fast as those of us afflicted in some way with LC would like. We just must keep on spreading the word and supporting in any way we can. Little by little our voices are being heard. Don't give up.

Kasey

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Larry,

Part of the reason I found this site is because there is or was so little out there for Lung Cancer victims, families, etc. I had no idea how huge this issue was until my friend was diagnosed and in the end, lost to this beast. I am so very grateful to this site and to the people here for everything they do each day to make this hell more bearable.

My mission or goal so to speak is to make a difference however I can and to make sure people know that LUNG CANCER IS NOT A PUNISHMENT IT IS A DISEASE THAT STRIKES WITHOUT DISCRIMINATION. Brad never in his life smoked, which made his diagnosis twice as shocking. He was young and healthy and just a vibrant and ALIVE man. In 3 short months this disease took him. It was and continues to be a painful lesson to me and my family. I made a promise last year that I would never give up trying to find a cure, an answer and along the way to do what I can to help others fighting this beast. I intend to keep that promise......

So I for one understand what you are saying, and I am proud to be a part of the effort to educate and help this fight however I can. Geesh this turned into a rant of sorts, I am sorry about that. :oops:

Hugs

Chris

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All i can say is "Have you ever thought about ramming the vehicle with the Pink Ribbon" I will probably hear about that but it is the truth. Has crossed my mind more than once.Sorry :oops:

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I don't know what to say that might be consoling to you. I guess I didn't think anything worse could happen to me and then we found out our daughter has breast cancer.

I honestly don't think I was ever as worried about my own situation as I was and am about our her. She was only 41 when she was diagnosed as a result of her very first mammogram. So far both of us are doing well in our individual struggles. She lives in Seattle where she has excellent resources available to her but her situation is no easier physically or mentally that mine.

I agree that many people have contracted lung cancer through absolutely no fault of their own. However, I guess it doesn't really matter which flavor of cancer a person develops, it's still devastating and no one deserves any of it. Especially the children like my young nephew who has had juvenile leukemia since before pre-school.

In my case I'm just tickled when I hear of any new cancer breakthroughs no matter what specific arena it's in. I'm no expert of course, but I do believe advances in any area will eventually benefit all of us.

With all the afflicted friends and relatives I have I'd need to be twice as big just to wear all the different colored ribbons that deserve my support.

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Hi Larry, I've felt exactly the same way for a long time now. When I read about new lc drugs/treatment it always seems that it was originally developed for colon cancer, or breast cancer etc, and it worked so well they figured they'd just run a trial to see how it works on lung cancer.

I don't read about many or any drugs/treatment designed specifically for lung cancer. Just seems like we get to use whatever spins off of the other cancer research.

There are 165,000 lc's dx'd in US each year. Certainly that's enough to make a profitable market for drug manufacturers. I just don't understand.

And so I rant.... :)

Barb

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Larry,

I totally agree. Lung Cancer deserves much more funding and respect. They need to get off the "quit smoking to prevent lung cancer campaign" and worry about how to cure and save people with lung cancer because many people did listen and quit but are still being diagnosed with lung cancer years later and they deserve to be saved like every Woman who unfortunately gets breast cancer.

I smoked but I expected the bad stuff wouldn't happen to me unless I smoked longer and I would be older instead I'm only 40 battling a disease that has killed 6 million before me and has a statistical survivability to 5 years of only 15% compared to breast cancers 80% I believe. To me that means I have a 15% chance of getting to 45 years old. Yes I also get frustrated about this but then I say "What makes me so special-there are children battling cancer everyday and that is terribly unfair"

Anyhow, just because I mentioned statistics, I don't listen to them, I'm not going anywhere because I want to retire at 62 years old...I look forward to it and I plan to have that opportunity.

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I agree with all that has been said above, and the publicity given to breast cancer often makes me angry too. I know only too well that lung cancer is the biggest killer....but I can understand too the high profile of breast cancer - I think the latest figures I read had the incidence being something like 1 in 7 women will develop breast cancer in their lifetime. Those are pretty appalling odds, and I personally am grateful that there has been so much money and research poured into this field, so that survival rates are actually very good.

So I guess you could argue that maybe its time to start focussing on the other cancers whose prognosis is not so good. We approached our local Cancer Council last year about acknowledging Lung Cancer Awareness day, and the reason they gave for not doing any publicity campaigns is basically that there is no early screening test that has been shown to improve survival, so there is no point in raising awareness about the disease :shock: !! The reason they like to flog breast cancer is that it may encourage women to check their own breasts and go for mammograms which may pick up the disease and they can be treated and saved.

I think if they were able to find a way of picking up lung cancer earlier, so that it could be cured surgically, then we might find it would receive a bit more attention. Now, why nobody seems to be busting their butts to do that, I don't know......

Just my thoughts,

Karen

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Hello,

I can emphathize with you all. I have noticed the reaction of people when they hear my Mom has lung cancer. She smoked up until 9 years ago. You can see in people's faces "I told you so," (those who knew she smoked) and "oh, well then..." (to those who were told she smoked). It is absolutely ridiculous to blame an individual for getting a disease from an addiction. When my Mom started smoking no one knew how deadly and addictive cigarettes were. Now we know, except not everyone is able to stop smoking (hence the addiction aspect). I especially find the government's stop smoking campaigns amusing. if the government really wanted to get people to stop smoking they would do everything in their power to help people quit. Why hasn't the government ever made tools for stopping smoking available for free? The patches etc aren't exactly cheap. But if the government goes against the tobacco lobby, that means a lot of money lost to a lot of politicians on both sides of the political spectrum.

Lung cancer research must be better funded. I'll fight for that for the rest of my life. The under-funding of research is the equivalent to saying that people get lung cancer deserve it. Do people who get AIDS deserve it? No one deserves to die, period. And for all the rhetoric about the sanctity of life that we hear on a daily basis, I would like to know where the sanctity of the life of the person with lung cancer is? Where is the lung cancer victim's sanctity when that person's doctor searches for a treatment that does not exist because it wasn't PC to fund the research that would have gotten one step closer to saving that person's life.

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Larry and all,

THANKS for bringing this up! (and yes Randy, there are those days where I get a little "pink ribbon" crazy!!!!) What part of "lung cancer kills more women per year than breast, uterine, and ovarian combined" doesn't the public understand??

And don't even get me started on AIDs research and our Governments funding all over the world...

Last Friday's "Primetime" on ABC had me fuming. They announced in the intro about the "stunning and shockingly high" death rate for black Americans with AIDS and the figure came out to be "by 2004 over 200,000 black Americans have died from AIDS". Now I know this is high, but what would the stats be for lung cancer deaths since the mid-80's??? I figure conservatively it would be 2,500,000 at the rate of 125,000 per year. Now THAT'S shocking!!! I clicked off the TV and found a way to contact Primetime and just opened a can of you-know-what on them via email. I told them that LC kills men and women regardless of their race in far higher numbers than AIDs.

I know I'm ranting here, but people outside of the LC world just don't seem to "get it". Mind you I have a best friend, sister-in-law, and mother-in-law that are all breast cancer survivors. I guess the key word here is "survivor" -- and I mean disease free for way over 5+ years.

Let me put my soapbox away for awhile now...

Thanks again Larry -- you always seem to hit the nail on the head for me with your posts!

Welthy

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I find myself assulted by this subject over and over. I get so angry but I use that anger to do something that I never used to do. I open my mouth and say what I think!

Last year I went to a grocery store in November, Lung Cancer awareness month). What did I see? They still had the little bank out asking support for Breast Cancer :!:

That was just too much for me. I told the sales lady that they needed to take that away and start supporting LC research. Her answer was "I don't know why that is still there. I feel the same way my mom died of LC." Still she worked in that store and had never said anything. The next time I see something like that I will make my way to the managers office and speak my mind.

Yes it is the stigma that hurts the funding. Not just the stigma because of it's connection to smoking but the stigma attatched to those %^$^$^ statistics. Let's face it everyone wants to back a winner and as long os those damn statistics are pushed around LC will never be a winner. Those statistics feed themselves. I've said it before because I have seen it. Because they expect people with LC to die they do not pay attention to some things that are clearly stated as dangerous. I know this because of the time that Pharmacist at the state medical board in Washington told me "once a person is diagnose with Lung Cancer they are terminal and all precautions no longer apply".

Kill that attitude and detatch LC from the stigma of smoking and see how quickly things change. And by the way. I have not had a smoke in a little over 4 months. All of the money the government got but pointing out those with lung cancer (using them really) didn't go to help me quit. I had to pay for it all myself. So much for their concern for us. All they saw was another way to add to the budget and their pet projects and the hell with the ones who they used as examples :!:

Sorry for my rant but this is not the best subject for me. I still get so angry I want to scream. Lillian

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Larry, I feel the same frustrations that you do and hope someday all cancers will be treated equally and funding to find a cure shared. I do know that there is now more LC info in the news because of some of the prominent people that have been diagnosed. The press is a very powerful tool and we need them on our side to help spread the alarming statistics and information about lung cancer.

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I think with breast cancer you have to keep in mind that it is the most common cancer in women. More women may die of lung cancer but more are diagnosed and survive breast cancer and go on to be activists or their families set up foundations in their name etc. I think also that any cancer research helps us all -- look at how many lung cancer drugs were originally for another type of cancer and are now used for lung cancer (Avastin for example).

Not long ago AIDS patients were shunned as deserving their disease until Ryan White and Elizabeth Glasser showed the public that kids and showbiz mothers get it too-- not just homosexuals and drug addicts.

Little by little I think we're getting some awareness (finally!). So to answer your question-- what does it take? For now, it takes us. It takes us to donate to organizations like LUNGevity that are funding research. It takes us to make a difference and get the word out until we get our hero that helps the public and politicians "get it."

When my husband was diagnosed I stopped supporting my favorite charity (the Christopher Reeve Foundation) and put all my money towards this site and LUNGevity. If we all do just a little we can make a difference. I really think we can be where breast cancer is in the near future if we all do what we can.

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I agree.

When I started almost 4 years ago, the one thing I could do RIGHT NOW was support people with LC. Over time, I realized along with support, that research was the key.

I don't focus on our legislators, there are organizations dedicated soley to that, and I refuse to wait for our government to dedicate funding to researh... instead I focused on supporting the patient and their family members right NOW, in the form of this website and also in the promise of research for more treatment options for those dx. with this disease.

In almost 4 years, I've seem huge strides in terms of gene therapies and treatments. Alot of these things were not available when my dad was dx.

I've also learned which organizations care about eradicating this disease and how survivors and family members can help by advocating for public awareness and research.

Keep talking, keep e-mailing, and keep the faith.

It's a slow process, and SO frustrating, but one by one, one member at a time, we WILL and DO make a difference.

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Larry I so agree with you. It wasn't until I started reading this message board that I realized other people felt the same way I do. And also I can say something about the stupid questions they ask.

It annoys me if the first thing they ask is if I smoked. Every single person I came in contact with asked me that. Maybe I can't totally change the way medical people act but I can try and get them to stop asking that question.

I can see my dr's asking me the first they met me and needed to know, but not every single nurse and technician. I used to smoke but quit. they all act like I brought this on myself.

Since reading this board I'm now asking questions like fireman in big cities get exposed to smoke all the time. do they all end up with lung cancer. If not, than stop asking that question.

Thanks for letting me rant also.

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i have moved on from the morons who dont get it

just today where i bought lunch they were raising money for a local person with cancer Luckemia i think they were asking everyone who bought lunch to buy a band like lance armstrongs to support luckemia reserch the woman at the register asked me and i said NO she was like ohhhhh then i said i suport reserch for ALL cancer reserch not one in particular as NOONE DESERVES CANCER OF ANY KIND thank you very much!!!!!!! that sure shut her up

it is a sad fact indeed that the general public dosent understand lung cancer but then again we dont have a celebrity who is willing to join this fight not to mention the survivors are few. it is clear that the government is funded by the tobacco companies it makes me sick that there are still states that allow smoking in public places. i for one would like to sue my state for failure to protect my health in public places..

on one of my visits to the hospital for a check up a woman walked up to the entrance and lit up. right behind her was a sign posted "NO SMOKING WITHIN 50 feet of the entrance"

this woman was standing right at the door puffing away and of course the door was open and all the smoke was pooring into the building and waiting area for valet parking. I could not keep my mouth shut i walked up to the woman and said "sorry mamme there is no smoking within 50 feet of this building" she turned around and said "what do you care" i said "your smoke is bothering me can you read look at the sign." the woman had the gaul to take a puff and blow the smoke directly at me. she toled me not to be so sensitive. this made me furious i shouted I HAVE LUNG CANCER AND I AM SENSITIVE TO YOUR SMOKE

she stormed off but then i turn around and the security guard is there he also had the balls to say to me "you cant do that" i said I JUST DID and why arent you doing your job mr security. isnt your job to uphold the rules!" just then another person aproached the building with a cigarete i walked right up to the person and said read the sighn this is a no sm,oking area this person walked well away from the building then i walked up to the security guy and said i will never keep my mouth shut when it comes to me breathing somneone elses polution do your job

the same situation happend where i do my food shopping i got the manager and toled him about employees at the entance smoking and i didnt ffeel i should have to walk thru this cloud of smoke

he didnt do anything about it the second time it happend i got the manager and said come with me and showed him his employees smoking AT the entrance

i have not seen an employee smoking at the entrance since.

i refuse to be silent this beast hasnt gotten me yet and as long as i can speak i will protest against smoking in public places.

Ed Rendell i cant go to a restaurant in the state of pennsylvania unless it is a non smoking one because you failed to make this state A NON SMOKING STATE

i could go on and on..............

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Dear close to the edge, I've had exact same experiences various places for last 5 years. And some people are so rude when you ask them to move because they are in no-smoking zone.

It's just not us lc survivors, it's everybody with breathing problems and people with children with breathing problems. No one wants to inhale that crap.

Every time a rude smoker ignores the rules or refuses to comply, it hurts the lc cause and here's why. General public understands lc is associated with smoking and associates rude smokers with all smokers, therefore if a smoker gets lc... well they deserved it.

Have you noticed now that the tobacco lobby is paying for movie stars to be "rude" smokers in the movies?

Barb

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I would like to know what happened to the money the tobacco company's had to pay out from the lawsuit years ago? Why isn't that money being used to help smokers quit? Why is it that health insurance companys will only pay for smoking cessation drugs for 6 months? Seems to me it would be less expensive to pay for Zyban for a year than a lung cancer operation and/or chemo.

As we know, people who have NEVER smoked are getting lung cancer. It's so frustrating!

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