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-Cheryl-

Nice ain't cuttin' it.

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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 damn 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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Cheryl and Jack,

First, I have to say Cheryl I am so happy that you have Jack. His message clearly shows how much he loves you. Way to go Jack!

Second, I am so sorry what you we nt through at the convention :( It just is not fair. I don't know how or why some doctors act like they do. Your post made me feel really lucky that we have not encountered that yet.

My mom's onc at first told her she could die during treatment, but never once put down LC, it was just putting her down for weight and not the best managed diabetes. Our oncologist is VERY positive about lung cancer and that does give me hope. He is very well known, so I hope that can also give others hope.

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There's something to be said for righteous anger, Jack. We have more registered members than any other on line Lung Cancer Support site I've been able to find.....and I've looked. There is great potential to do ourselves and our loved ones good. I hope that your candor helps to light a fire that isn't easily extinguished.

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Cheryl,

I am sorry for your frustration and disappointment. I wonder sometimes what these gatherings are meant to accomplish, and are they for normal patient types or closer to political fundraisers in spirit??

Anyway, I guess we can take a lesson from what happened at that conference....

Praying your spirits will be lifted soon,

XOXOXOX

MaryAnn

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...then again, doctors with patients and an office (not those "experts" who travel and consult) probably don't have TIME to go to the out-of-town do-hickies and be away from their practice...

I know that my oncologist DOES take vacation with his family, but he also is up early, stays late and works weekends - I'm not sure where "seminar" would fit!

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Cheryl and Jack,

I am so sorry about the convention! It had the potential to be a wonderful event and it stinks that you left feeling depressed. Those things should leave people feeling uplifted and hopeful!

It is a good suggestion to have a more positive oncologist do things like that -- when my oncologist spoke at a session during LC Awareness Month last November, every single person in that room left with more hope than they walked in with and he was knowledgeable about every aspect of LC diagnoses and treatment (and Ginny was there -- she can vouch for it!)

It's a shame not all doctors can be like that.......

ps -- Andrea, it sounds like your mom has a great doc too!

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I e-mailed Cure Magazine this morning w/ my complaints and in that message I mentioned our website and gave the address. I aso mentioned how many members we have and how I notified everyone on this board of the outcome of the Seminar ... Now I noticed that they have since registered on our board. It's amazing how quick things happen when you try. I hope they are reading what really goes on in the lives of LC patients. Now, if they are smart, they will give LCSC some free attention in their publication.

-Jack-

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From the CURE magazine staff I would first like to ask that others who attened the meeting might want to post their responses and give a broader view of the session and overall weekend.

This was not a weekend only about new medical discoveries, especially when the cancer is as difficult as lung cancer especially for small cell.

As a survivor, I understand the frustation you must be facing. Having gone through advanced cancer with many friends and family, I do know the pain of hearing that there are limited options.

The personal response to Dr. Belani is entirely your right. As to his credentials, Dr. Belani has been voted among the best Doctors in America continuously since 1998 and won the Cora and John Davidson Founation Award for Lung Cancer Research. He is also the Editor-in-Chief of the journal Clinical Lung Cancer, and Editor of the medical journal Chest. He is a reviewer for 8 other medical journals. He has spoken at more than 70 national and international conferences.

What also happened that the readers of your responses will not see due to your limited explanation of the weekend, is that the others at the conference found new knowledge in general cancer education, supportive areas like pain, anemia and fatigue and a number of related issues such as familial risk, end of life issues, dealing with metastatice disease, sexuality, young adults issues, eating healthily in treatment, spirituality and personal journies that give hope and humor.

The evaluations from other participants in the session were all good to excellent. The major complaint was that there was not enough time for quesions, an issue that has come up with other sessions and one that we will rectify next year.

I will personally refund your $100. All I ask is that those of you who might have thought about attending one of our conferences in the future, come and see for yourself.

Again this is not to engage in dialog, but only to present a balanced picture of the meeting.

We appreciate your feedback and truly hope that you and your wife find the answers you are seeking. We wish you the very best of luck in your cancer journey.

Kathy LaTour

Senior Editor

CURE Magazine

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Why am I not shocked at how the entire forum was handled? I guess because that is just a small sampling of how the country feels about lung cancer. It is not politically correct to have any type of encouragement to our lung cancer patients. When you say you have lung cancer you can tell immediately you have already lost their attention. In their mind we, the patients, have caused this to ourselves. I wonder when the medical community will start to see that cancer is cancer. It doesn't matter where its at, or how it got there, its there. Now find a cure for it. I have lost four family members to cancer, including my parents, and grandparents, and now my husband is a lung cancer survivor.

I watched CNN News on Saturday morning only to be disappointed by the lack of coverage for lung cancer. I'm sorry that CURE magazine has a one sided approach to cancer, maybe they need to get more involved in our lung cancer fight before they do this again next year.

Sorry if I offended anyone with this. May God Bless each one of us.

Bonnie and Howard

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Guest bean_si (Not Active)

To Cure Magazine

With all due respect:

From Merriam Webster: CURE a complete or permanent solution or remedy

Those of us with lung cancer, especially small cell, are not being cured. Is it any wonder we are looking for new, effective treatments and research? Is it any wonder we think those operating under the term CURE would have information on such -- on patients being CURED?

It is most certainly understandable.

You appear to be putting up barricades around yourself because you seem to think you are being attacked instead of being appreciated. You are not being attacked. But neither are you being entirely appreciated.

You tell us:

others at the conference found new knowledge in general cancer education, supportive areas like pain, anemia and fatigue and a number of related issues such as familial risk, end of life issues, dealing with metastatice disease, sexuality, young adults issues, eating healthily in treatment, spirituality and personal journies that give hope and humor. come and see for yourself.

'Hope and humor.' That's nice. 'End of life issues.' That's informative.

Please understand, we are not here only to be given information on dying and being ill. We are here, hoping to be cured.

Thank you for your understanding.

Cat

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I notice that even the reply by Cure Magazine staff relagates lung cancer to the age-old position of being "difficult" which seems to be just an excuse to right its victims off.

I also would like to know who does the voting as to the Dr being one of the best in the USA? Patients or medicos? The post doesn't say, I notice.

Elaine

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Mrs. LaTour,

I find it interesting in your response that you were a "survivor"... I am happy you are a BREAST cancer survivor and only wish a magazine such as yours and the powers it has, would devote the deserved time and attention to LC as has been given to breast cancer research. You are reaping the benefits of the heavy lobbying for that disease... I am happy for you. Folks on this site don't have that luxury. Cure ought to be all over this disease and actually challenge the medical community, that is unless you have to already watch who's toes you are stepping on.

There were some good things at the event. Your story was great and I enjoyed meeting Jerry VanDyke even though it was under bad circumstances. If you were familiar with the site, you would have noticed my wifes posting on your convention. She had several good things to say about it.

I will certainly not doubt the credentials of your Dr. Belani... All I said was he was one of the rudest, impatient and arrogant individuals I have met in a long time. I'll stand by that... I was at the meeting, I witnessed it. I challenge you to get the list from the Baylor support group that was at that meeting. I guaranteee you will be hard pressed to find a happy customer there. I am sorry you can't take some constructive critisism about your convention.. especially when you weren't at that meeting.

Yea, I could use that money for prescriptions, but you go ahead and keep it to help pay for your high dollar speakers that say nothing... PLease understand these are my views only and I speak for no one else..

-Jack-

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Jack is passionate about finding a cure for this disease. God Bless him and his intentions. I am proud that he speaks the truth and from his heart. How many of us stifle our true feelings just to be "politially correct?" All I have to say is "a squeaky wheel gets the grease!" Do you think "Cure" magazine would have signed on just to catch the "latest suggestion on ways to improve bowel movements without laxatives?" I am afraid not!

Just an update....the editor, Kathy LaTour, wanted our address. I guess to mail us back our $100 from the Forum. We would like to donate the money to LCSC if that is the case! Lung cancer is the most widely diagnosed cancer in the world. There are too many of us. Be a pest, write some letters, make some calls, stir things up, step on some toes, do whatever it take to be heard. Just be heard! We are a force to reckon with. We need hope for the future. We need a cure for this disease.!!!!

Cheryl

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:x:x:x:x

Cheryl and Jack,

I have to cool off before I respond. I COMMEND YOU BOTH for your HONESTY and INTEGRITY! I had a feeling you weren't going to hear much about lung cancer at that Event. I'm a nine year survivor of lung cancer, and I haven't seen an event YET that has catered to lung cancer.

This IS the # 1 Cancer Killer!!

Someone is making BIG BUCKS off of all of us!!!!!!

I'll be back when I cool off. I can't let this end here!

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I am all for speaking your mind- especially for those who are fighting cancer and fighting for their lives. No one is a better advocate for you than YOU and if you disagree, if you want your opinions to be heard, if you second guess your medical care, if you're not happy with what someone else is telling you, speak up. Everyone has a right to their opinions and to voice how they feel.

Cheryl, it is very obvious how much your husband loves you. Not only is he passionate about finding a cure and raising awareness, he is direct and eloquent all at the same time.

I would hope that the Cure magazine would want to work with us on some of these issues of raising awareness for this disease. WIth 1200 active members and 1 MILLION visitis a month here, we could really generate alot of traffic for them and with their readership they could help quash the stigma that lung cancer has and help in the efforts to gain awareness, the need for funding for futher research and eventually a CURE (pun intended here! :wink: )

I hope so.

Bless you all-

Love,

Bless you both.

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Again this is not to engage in dialog, but only to present a balanced picture of the meeting.

We appreciate your feedback and truly hope that you and your wife find the answers you are seeking.

WOW!

Kathy - I was TRYING to see your points and then you close with the above comments. "Not to engage in dialog" - no kidding - you don't want to talk to us or listen to us anymore than anyone else.

"...hope you find the answers you are seeking"???? Um, yeah - that's why I subscribe to your magazine Cancer Understanding Research and Education (C.U.RE.). I kind of thought that was your purpose....

At the same time, I hate to see a new event get bashed. There's plenty of people here who would be willing to contribute thoughts and ideas to make next year more successful....if you care to talk about it....

SandyS

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Sandy,

I didn't even catch that! WOW is right. I wonder why she posted if not to engage in dialog? I had this impression that she cared about what real survivors think.

I hope I am not wrong.

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I too was extremely disappointed in her message to us. Jack did an excellant job at descibing how he felt sitting there and listening. CURE should also be aware of the tremendous fight lung cancer paitents have to face. Different because of the stigma attached to it, which also shouldn't be.

I often feel the drug companies really don't want to find a cure for it. If they did, they would lose trillions of dollars, and their CEO's wouldn't be able to take those bonus'. Why doesn't the largest group that gets cancer, lung cancer, the biggest killer of them all, get the largest funding. To me that only makes sense.

Now please no one get upset with me for this, but, Kathy had breast cancer. From what I remember from the American Cancer Society, they are lucky enough to receive the most funding. What does that tell you!!

With all the credentials she listed for Dr Belani, I would bet dollars to doughnuts, he does NOT see paitents. And therefore lacks any and all compassion. We were so lucky to have an onc. that was down to earth, compassionate, funny, and someone who became a friend.

Debbie

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Jack,

Freedom of speech is your right. Having an opinion is your right. However, do NOT assume that I will back this boycott. I firmly believe the magazine a huge plus in listing out the cutting edge treatment and research on many different cancers. It is NOT based on breast cancer and a short line about a few other pet diseases.

I support your right to voice an opinion, but this is getting to be a witch hunt against someone that could be a really great ally - basically because you did not hear what you wanted to hear at the symposium. How were the other speakers? If your ire is directed at one individual, do NOT judge the whole weekend on that. This was NOT billed as a lung cancer symposium, it was a CANCER symposium - generalized topic.

I do not understand your continued badgering of Kathy LaTour who took the time to log on to the site and read it AND comment. You ranted about the money being not well spent - she offered to return it. You raved about the "dandy" that represented lung cancer - she gave you his credentials... What do you want?

This was a "first annual" event. There is room for improvement, state your case and move on! In your own words, GET OVER IT! So far, there is no "cure" for lung cancer. I can understand disappointment in NOT hearing the words we all want to hear. However, a quick reality check would show you that by having one doctor represent a cancer, it WAS going to be "just touched on" and full of generalizations and statistics. Basic background would be covered and other "cutting edge" treatments would be brushed upon - no time to list everything and as Ms. LaFore said, others had complained about not enough time for questions...something that they plan to "fix" next time around.

I'll give you credit, you got their attention. They logged in, they responded to your heated missive and we (the collective board) jumped on them. Do you think they'll be back? Would YOU be back? I don't think I would...so you've shot yourself in the foot.

NO, do NOT count me in on this, subtract my number from the generalization you have entered here. There's my opinion. You had my support at the beginning, but as this has worn on - count me out.

Regards,

Snowflake

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Guest bean_si (Not Active)

I try to be a peacemaker but sometimes I get in over my head. Sorry.

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