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Nice ain't cuttin' it.


-Cheryl-

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Guest Phyllis

I add in my two cents also. It sounds like the convention was very narrow in its focus. To have another doctor who strictly wanted to catergorize us with statistics is what keeps us from getting new and improved treatments. It is why we still have to deal with roadblocks in order to get the procedures we think we need. It seems like breast cancer survivors now have a lot of choices in treatment. I don't subscribe to any of those magazines anyway. I would really like to go to the big oncology conference in New Orleans this weekend instead. That should be more interesting than listening to what's his face.

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Cheryl/Jack,

Thank you for posting your comments. I really appreciate your candor. It is sad this editor Kathy, just doesn't seem to get it. Who's pocket is she in? Doctor's of this caliber are so insensitive to LC because of the stigma and not treating patients one on one as Budd said. They don't realize this is not only a smoker's disease, just like AIDS is NOT just a homosexual disease. Aids had a stigama also. There are so many people LIVING with this disease now (AIDS), look at Magic Johnson. Why do the pharmacuticals make it so difficult for us to get prescriptions like Iressa. Who can afford the price tag to possibly have a cure for this disease. It's all in THEIR pockets and that is all they care about. It seems that even if there was a cure for LC, we couldn't afford the treatment or medicine. It again goes back to the suit and Rolex that Jack described this doctor was wearing. He gets paid to mouth on whatever makes the audience feel good, just like the infomercials for the Real Estate industry and etc... He is paid by the big conglomerates (sp?) who provide all the $$$$ and pay him the big bucks and dictate to him what to speak about. It is so sad, what has happened to ethics, caring and compassionate people. People helping one another. Does this make sense? God bless us all and praying for a cure, and it doesn't look like the magazine "CURE" will be contributing much on how to accomplish the task. It seems TITLES of people are more important than research, new treatments and procedures...

I hope this doesn't offend anyone

God bless and prayers...

Karen

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I sent my letter to Kathy and received a note back from her.

All it said was they were watching the post here. Plus to go to cure

today volume 2. It really angers me that lung cancer is looked upon

as a smokers disease. My father never smoked and died of lung cancer

and yes my mom smoked and died of lung cancer. Lung cancer most

definatly does not just effect smokers. My youngest daughters friends

father has lung cancer just diagnosed a few months ago and he is a

non-smoker. Focus should be finding a cure not the cause. Haylee

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I just wanted to add that I replied to Kathy's note to me. The article

I had went to was on smoking. Not the one she intended for me to read

:? so I exspressed my feelings on the smoking article. Kathy

responded with a 2nd letter informing not to respond to her before I

read the right article. Just abit snippy there Kathy :evil: You said

you have been following the post here. I do apologize for reading the

wrong story and making a mistake. Haylee

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Hi All,

First of all I have never seen the magazine, but when I looked at the website I see they give free subscriptions to cancer patients. That tells me they make their money from advertising. So it's probably not realistic to expect them to take any position which might irritate their advertisers. I'm going to take a wild guess and assume their advertising revenue comes largely from the big drug companies. Bottom line is we can't expect them to "bite the hand that feeds". Makes sense to me. Does it make any sense to you? Just my uninformed opinion....

Best Wishes to All, Dave S

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Kathy.

I do hope that you are following this thread. If you sense a bit of hostiity from members of this board, please don't take it personally. What I like about you is that you took the time to respond to our board and seem to care. The hostility you sense is frustration, as we wait around each and every day watching our loved ones die from this disease. More poeple are diagnosed with this cancer than breast cancer, prostate cancer, and colon cancer combined. Yet we are way underfunded, and the options for treatment don't give us much hope. I attended the forum last Sat., and Dr. Belani started off his presentation about the perils of smoking. He even had a cute lassie looking dog smoking a cigarette. I for one did not find it too funny. You see, that is the stigma, not everybody who gets lung cancer smokes. Why didn't he start off with something like "You don't have to smoke to get lung cancer....it could happen to you too!" The sad realty is, I wish that I were diagnosed with breast cancer. People would think,"How brave she is." Perhaps even have empathy for me, instead of "Did you smoke?" I am ashamed of this disease. Yet why is that? Nobody desreves any kind of cancer, yet society looks at me as if you got what you desreve.

I am the fourth generation to now be diagnosed with lung cancer in my family. I have Adenocarcinoma with primarily BAC features, considered to be a rare form of lung cancer. Am I any less deserving of this disease? No. We just want awareness Kathy. We want more money and more attention brought to our cause. I accidentally wandered down to Sammon's breat cancer treatment area at Baylor Hospital. You work there. Now mosey on down the hall where the rest of us get treated and tell me that breast cancer is fairly treated like all the other cancers????

We want a future with hope. A diagnosis of lung cancer these days is pretty much a death sentence. I will fight this disease like many of my friedns here on this board, but we need help to fight it.

Dr. Belani, was supposedly an expert in the field of lung cancer. Yet, he didn't talk about anything that he was not reseraching.- A little biased, hopefully not unimformed as an expert. There was little to no time for questions, and Dr. Belani made me feel insignificant and hopeless. I left in tears. I surely don't rest a cure totaly on Dr. Belani, but his presentation was very discouraging. Kathy, you are in the posistion to help us fight this disease with Cure Magazine. Please do not be offended by misguided anger. WE as a group are angry, but not necessarily at you. We just want for Cure Magazine to help us in this fight. Is a magazine for all Cancers- right? We need more exposure, more poeple to care and get involved. Won't you help us please.

Sincerely,

Cheryl

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I received a 3rd letter from Kathy and it says ...The story is the cover

story on that issue. I don't mean to sound snappy and I am far from

perfect. I just feel that many of you on the LCHELP have not seen the

amount of coverage we have given lung cancer. I am frustrated mostly.

Kathy Latour

Haylee

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Guest bean_si (Not Active)
The story is the cover story on that issue. I don't mean to sound snappy and I am far from perfect. I just feel that many of you on the LCHELP have not seen the amount of coverage we have given lung cancer. I am frustrated mostly.

Kathy Latour

SHE'S frustrated! :roll:

WE are the patients. WE are the ones with the disease that is underfunded. WE are the ones who are blamed for having cancer.

I don't understand Cheryl - Did the seminar have a picture of dog smoking? Please don't tell me they had an actual dog smoking. Excuse me, but I would have vomited. And the doctor started out talking about the perils of smoking? Oh Lord almighty.

It reminds me of one session I had with a therapist. He was recommended by my EPA - sessions were free but I never went back. I explained that I was feeling anxious and depressed about having lung cancer. Before he asked (knowing he would) I told him I did not smoke.

In a very high and mighty tone and with a sneer, this therapist responded, "So when did you quit? I know you must have smoked."

I came looking for help. I came feeling desperate. Then this so-called professional starts pontificating. Luckily, I found another therapist. This incident is just another reminder of how the public, even professionals, look at us. No wonder research for LC is so underfunded. This negative attitude is everywhere.

Kathy, that's why we are so frustrated and scared. I doubt anyone is angry at you. We are just asking for equal time - equal research. We are saying that we are suffering and are made to feel guilty about our very real pain. That, Kathy, is inhumane.

Is anyone out there truly listening to us? Do you hear us?

Cat

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I just woke up from a dream of stuffed lassie dogs smoking, hundreds of them. While people laughed and sneered. What was the point of the dog smoking? What was the point? I would assume most, if not all, of the people at the session had lc or had a loved one with lc. And I assume that statistically speaking, 85 per cent of those lc survivors smoked or were former smokers. So what was the point? Prevention of smoking? An added incentive to have people quit smoking? What was the point? Did he think that there were some people who DIDN"T know that smoking and LC are often related? I am sorry to say but to me it sounds like he was rubbing it into the faces of those survivors present, and now by word of mouth, those of us who have heard about the lassie dog, be it stuffed or real or a picture.

Do people with breast cancer get asked if they breastfed? Or why they didn't have children? Or why they had their children late? Are there sessions that begin with lassie dogs nursing

a litter of pups?

What does my rant matter, I mean, aren't I as good as dead already.

Elaine

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Jack,

To follow up on my previous post, is there a lc survivor or caretaker who doesn't already know that he or she is going to be treated like a dog at least by a great deal of the medical people who they meet not to mention the holier than thou on the street? Oh, I guess it was just a reminder.

Becky, I know you have been treated kindly. But you never smoked. I love you like a sister, but you have to admit the dog smoking is offensive.

Kathy, if you are reading this, I do want an answer to my questions about the dog. And about your nursing and childbearing history. It' only fair, ya know.

Elaine

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I hope none of the pittance of grant money earmarked for LC research was used to fund training for teaching the dog to smoke. Who would even think to train a dog to smoke? The answer to that question scares me.

Kathy, there is a recent thread in the caregivers section of the forum about stigmas. It was started by fellow member Andrea. Pls read it and respond. I hope you will.

Elaine

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Dear Jack and Cheryl,

What was he thinking, I'm sorry but I have to give my opinion on this one, I am not sure if that incident would be Kathy Latours fault it seems to me this Doctor needs some lessons in humanity..Who would allow their dog to be put through that. I personally dont have any pets, but I know people who would be appalled. I really dont get the comparison, wasnt the seminar on latest developments and finding cures. I dont know anything about this doctor so I cant judge his work and I am not here to judge however I can state my opinion that was done in very bad taste and I am sorry that you two had to be witness to that incident..

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Back to the 1st few posts,

Everyone should be allowed to post their opinions on this board without the fear of retaliation from others. It is great to have many different opinions however they all have to get along. Lately I have noticed a pattern people posting and other members immediately attacking them and this is not how this should be working. Everyone is here for basically the same reason and everyone should realize that not everyone sees things the same. Remember, the information posted was about the conference, not the publication.

The cure is a free magazine and that is an incredible service for someone or company to do. It may not fit too very well with Lung Cancer, however it is still a good organization and wonderful service.

As for the conference, I havent been to very many that even came close to filling my expectations. As a matter of fact, just rapped up our own yesterday at my company.

As an organization I dont know or havent determined what the CURE and LCSC can do for each other as in Ads, Support, Activism. I am sure we it will work out great.

RIck

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Thanks for the two links, Cary. I stand corrected on one point. It was a video and it was probably trick. Whew, at least the good doctor wasn't spending his "free time" getting ready to audition for stupid pet tricks on the Letterman show..

I still don't see the point of showing that video in the setting in which it was shown. So my question and commentary stand. What was the point if not to point out the obvious to people who don't need it pointed out to, for sure?

I imagine it is a nice anti-smoking campaign ad directed at our young people, not for LC survivors and their families. It was poor taste at the least. However, I was not there, and thus, I don't know what the Dr said etc. I just can't think of a reason to show the video there. Cheap laugh? I'm not laughing.

Am I overly sensitive? Probably. I smoked. Were there warnings on cig packages when I started to smoke. I imagine there was. They were also about 50 cents a package and could be bought in machines nearly everywhere young people went. As far as warnings.... Did ya ever see Reefer Madness? How could anyone expect a young cynic like me to take any warning to heart after that one? Plus, they were taking red dye #3 off the market cos it caused cancer in rats? But cigerettes were available at the bowling alley. No ID needed. Surely, the government wouldn't allow something that dangerous be sold at the bowling alley for the price of a couple cokes? Or would it? My husband got them next to free in the military. I think that was the US military, if I am not mistaken. Ha.

I am still responsible, but there are contibuting factors. Read my recent rant under Andrea's stigma post. No one responded. But.....

I do apologize for directing some of this at Kathy, who didn't herself show the smoking dog video. However, if one stands up as a spokesperson for any organization and its events, well.....

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Rick,

I was actually talking about the computer generated "abuse" of the dog. I once saw on TV, these 3 frogs that were made to preform, I think they must have been beaten repeatedly to get trained so well. I had nightmares for weeks. All I could keep hearing in my head was "bud" "weis" "er".

Cary

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Dear Kathy LaTour,

To see how lung cancer affects so many people, check out the family members forum. There is quite a long string from some remarkable young people whose parents have cancer.

I am still mulling over this discussion about your conference, but I think Jack makes alot of really valid points. And if the doctor's demanor and presentation were anywhere near what Jack says they were, I say shame on him, shame on you. When I get a big chunk of time (hard to do, with a two year old child, a full time job, a two hour daily commute, eight acres and a husband who is still recovering from his cancer treatment) I'm going to examine this controversy more closely.

I will say that we have gotten your magazine and I've been a little disappointed in it generally. Nothing too cutting edge in there, and everything seem to be geared toward whatever cancer happens to be the most "popular" with very general articles. Sometimes I feel like I'm reading an article about a cancer in Good Housekeeping or Better Homes and Gardens (not to knock them). It's a nice read, though.

So what if some smokers get lung cancers. Tons of non smokers do, too. People who stupidly get too much sun in their youth get deadly melanomas (like me). All kinds of cancer are caused by all kinds of stupid human activity. But a CURE for lung cancer helps everyone. From the smokers, the nonsmokers, and the innocent family members including children.

Karen C.

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As a pet lover and owner of three saint bernards and spending my

life working with animals. I hope that was sometime of trick in the

video and that poor dog has not been treated in such a cruel way.

Either way that video was done in very bad taste. Haylee

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In answering Ricks question about how Cure can help LCSC... and my last nickle on the subject... Since there is really no strong lobby for LC, and with 1200 members registered( basically by word of mouth), I see this as a super start to be heard. Instead of 1200 members, how bout 12,000 members. In a politicians eyes and as a rule of thumb, for every letter they receive, they equate that 60 fold. This means they look at it as if 60 people feel the same way. If they receive 12,000 letters,.... well you do the math. "Cure" could offer an eight of a page in all of their publications, heck, a business card, or even a sixteenth of a page to inform LC patients all over that they can come hear for down to earth support. Are there really any other forums out there doing that? Hopefully there are, but I haven't found any. How hard would that be for Cure to do? This would give the board the exposure to get the numbers in order to be heard... Yes, I think "Cure" and the LSCS can establish a good relationship ,but the ball is in their hands. If I am out of line and this sounds proposterous, then I'll surely shut up. I may be way off base here, I don't know. -Jack-

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I was going to post this in the "Activism" section but admittingly, I do not visit that forum often. As I glance at the forum, I also see very few hits and replies.

I recently attended the 1st Annual National Cancer Survivor Seminar sponsored by "Cure Magazine" held in Dallas, Texas. My take on the whole thing was a little different. For instance..., I think the title of the seminar should have been, The 1st Annual National Cancer Survivor(Lung Cancer not included) Seminar. Yes, the lady that runs the mag is a breast cancer survivor and a lot was discussed about that. Cheryl and I kept waiting to hear about the progress in Lung Cancer. Well we waited and waited for naught. LC was touched on very breifly in the main meeting and we thought we would get more in he "breakdown" sessions... one was on LC and was being presented by the main speaker...Dr. Chandra Belani. This guy is from somehere in the Middle East and I was noticing his demeanor before the meeting. The tailor made suit and the "Rolex" caught my attention first off. His cocky swagger caught the eyes of most of the ladies. Yes, I was interested in what he had to say and was looking forward to the session. I mean, as confident as the guy appeared, he must have some great things to say about L.C. This doctor is an Onclogist at some hospital in Pittsburg and maybe some have heard of him...I certainly had not. At any rate, we attended the 2pm meeting where e saw a video on smoking to start things off. The stigma continues and right off the bat, I was not impressed. Then this arrogant SOB went into a 20 minute lightening round discussion on LC and touching on very little. All we heard were percentages... it seems these doctors intentionally try to deflate you so you won't have any hope. They don't want you asking the questions because they can't answer them and again, I got the sense he was just trying to hurry up and get the meeting over. In some of his answers to the attendees, he was actually rude and recommended Phase one trials. I kept raising my hand but was never called upon. My question was simple... how can you go to work knowing you are not going to accomplish what your whole career is about, and also get a big fat check to boot? Who in the hell do you think you are walking around this place like you are God. What is it that you are so proud about? You have done, and offer nothing to your patients but doom and gloom. Don't you realize the patient knows thats a possibility? We payed to come here to hear the knew things with LC not the old news...Wake up for the week... this guy barely even knew about GVAX and obviously didn't discuss it. He did recommend getting on the internet and search for information! Wow, this guy taught me so much and I certainly got my $100 worth! What this guy needs is his *ss kicked for looking down on his patients and not demanding answers from drug companies and researchers. If i was a mechanic and you brought your car into me and I say I cant fix it then I am not going to stay in business long, especially if you paid me, I was arrogant about it and I did not fix it. I am tired of being blown off by these jerks and treated like we are a pain.

If they think we are a pain, then we ought to give them a real reason to think we are a pain. I hope all 1100 of the members on the board read this about Belani and tell 1100 more people about him. I will be sending this to him for him to observe. I want him to know that he is not welcome around my house. Got any more asses for Drs. out there?... Let us all know who they are so we can spread the word... there is no sense in future patients having to go thru what others have had to. While we are at it, Shame on Cure Magazine for leaving out LC. You certainly took $50 a pop from these survivors so you could pay your da_ _ doctors who attended but offered us nothing. Call, write or scream, but give them hell. We are a large volume of people that could make a lot of noise if we wanted to. Somebody did it with breast cancer and look at the results. We can either be nice about it all or we can raise hell.

If this offends anybody then I suggest you "get over it! Please dont ask what I am doing about it, I am already a step ahead of you...What are you doing?

-Jack- P.S. On the way home from the Seminar, Cheryl was brought to tears from diappointment...That pisses me off!

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