New Decision regarding posting events and products

• By LTLCS
• Posted March 25, 2009 at 7:18 pm
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Thank you Amy and all those at Inspire and LCA for all you do. It's greatly appreicated.

Sincerely,
Connie

• By chessie-too
• Posted March 25, 2009 at 8:04 pm
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I think that is a wise decision Amy. If anyone is interested, it is easy enough to go to that link.

And thanks for your hard work and dedication to help make this site what it is.

• By Marylou1
• Posted March 25, 2009 at 8:36 pm
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Hi Amy:

I think this is a wise decision also, however, I would like to ask a question about a few things I have posted in answer to questions.

First of all, some people have asked what to use on the Tarceva rash. Well, I must admit I have offered my routine of exfoliating and the use of almond oil and Eucerin Cream (not the lotion).

Also, recently someone asked for something to help with the terrible itch that we sometimes get either with chemo or the Tarceva. My suggestion was also something that I use quite a bit, and that was Benedryl Itch Relief Gel in a 4 oz bottle.

I know I have helped several people with these suggestions and there are others who have posted some products that they use. Will this be allowed?
Thanks,
Marylou

• By jazzbo
• Posted March 25, 2009 at 9:15 pm
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Hi Marylou, I wonder if something along those lines, as far as recomending anything , would probably best be made off site like in an e-mail. When anyone recomends anything to a person who's receiving treatment should run it by their doctor first. What you are recomending in this post seems ok to me who knows if it is for someone else. There are people out there that recomend some pretty radical products and treatments, a lot that aren't proven. We as a group have to try to protect our weakest members who could be searching for that next miracle cure.
RE: Eat chocolate cocoa puffs for that tumor you have. It shows shrinkage of tumors in people in eastern Asia. I know a couple of missionaries who swear by it. They came across a tribe in the wilds who only eat this miracle product and have no cancer in their tribe.
Amy in my opinion this is a right on decision. We would all like to cure everyone. But what I see as our mission here should be to instill hope, support and education as we know it. As I said IN MY OPINION and it's just that.
Marylou, I don't want you to think I was picking on you. I have loved your strength and courage ,keep it up- John

• By LTLCS
• Posted March 25, 2009 at 9:46 pm
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Very well said John. I totally agree. I like to see our members (me inclued) get support and help and educated when we are going through this journey called lung cancer. This place is hear to help us through the good reports and the bad reports, but we're here for eachother through the rough spots and sad times too.

I'm very pleased with the decision that the Staff at LCA made. Good Job! Thanks agagin.

God Bless,
Connie

• By ericnilson
• Posted March 25, 2009 at 10:36 pm
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I think it is valuable to see what others have used to treat side effects and what procedures that have had done.

The suggestions allow one to check with one's doctor about the treatment/product. The doctor may very well say that the suggestion that was made on the site was a good suggestion.

Also advice on how serious side effects are and whether one should go to ER or schedule a doctor appointment can be very helpful.

• By ericnilson
• Posted March 25, 2009 at 10:46 pm
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For any side effect one needs to check with one's doctor for advice. Above was perhaps not stated clearly.

But I come to this site for informaiton on how to fight cancer. All information about what others have tried is uesful to me. I can take this information and discuss it with our Oncologist.

For example, my wife has not yet tried Avastin or Alitma. I am very interested in hearing about people's experiences with these chemo drugs, problems that they had, success that they had, side effects that they had and what products their Doctor recommended that they use to fight the side effects.

I can take all of this information and discuss it with our Oncologist. This information helps us to make better decisions.

Eric

• By D1
• Posted March 25, 2009 at 10:51 pm
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I, too, think the personal suggestions really help and are very well intended.

However, I do have a problem when people proselytize these alternative cures......

Sometimes, the world gets too politically correct.

• By bayrealtor
• Posted March 26, 2009 at 12:04 am
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I hope you reconsider your decision. My dear wife and I have found much information here from those who are fighting this cancer. I hope you will still allow comments from those who have used a med or cream for side effects or diet etc.....
Recently there was much talk about a product called LDN here. After we researched it more and talked it over with our own onc. as well as others like dear Dr. West we decided NOT to use it while taking Tarceva as it may take away from the Tarceva. (No one really knows and it is a decision for each to make.)
The truth is that even the Professionals do not have answers for many of our questions and ideas or hearing from those of us who are fighting this monster and results we have had is of highest importance as well as a real source of comfort and hope. For those who do not like these things..."Dont read it!" Simple.
Please do not take away all the great ideas for products that has helped us with things like how to control a tarceva rash or itch. If this is your decison, it indeed will be a sad day for all.

God Bless "If I'm allowed to say that"
Love to you all my friends,

Bill & Cathy

• By bayrealtor
• Posted March 26, 2009 at 12:34 am
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Had to reply again.....sorry:
I used to live and do business in China for years with my lovely wife Cathy. We lived close enough to Hong Kong that we could pick up their TV stations, however, China still had control of content like their newspapers. I found it amazing that they had the power to just shut off the TV if Hong Kong was brodcasting something they didnt agree with. This is America....what now? I ask for help on on a rash my wife has using tarceva and now I can not get ideas here from those who have used tarceva and found something that helps them?
SAD.....

• By Ray
• Posted March 26, 2009 at 3:50 am
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Amymaura - Whoa! I always thought the line in the sand was non-profit versus for profit (comercial). So I always felt comfortable with LCA and Lungevity events, especially sharing whether I participated in an event. This decision is sweeping and sad. I have often seen people come on this site trying to sell anything from snake oil to shark-fin soup and found it distasteful for them to market to people scared out of their mind; people who are vulnerable to such predatory marketing tactics.

• By Christine_D
• Posted March 26, 2009 at 7:49 am
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I wonder if maybe a disclaimer at the top of each category or forum stating that LCA does not endorse or recommend any of the products or services that MAY be mentioned in the various posts as well as a reminder to talk to your doctors before adding anything new to your medication regimine, wouldn't be a better idea than banning things altogether.

It seems like a disservice to implement this rule now in full force when so many have come to this site to seek advice on products, services and various treatments and have benefitted from it for so long.

It also feels like an enormous disservice to the lung cancer community as a whole to not allow awareness campaigns such as the one being talked about recently to be banned. WE NEED THIS TYPE OF EXPOSURE FOR LUNG CANCER AWARENESS!!!!!

Just my opinion of course and I will abide by the rules as I am sure everyone else will, too.

Thank you for all that you do,
Christine

• By jazzbo
• Posted March 26, 2009 at 8:11 am
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This is why i come here. The topics are our own and we own them and do what we want with them. I have to say that after reading the last responses it definetly has changed my mind to some degree. I guess we really do need an unbiased moderator to purge the snake oil salesman. After a decision does LCA check on thier decisions or only when someone requests a reason and explanation on why it's been edited. I'm not sure a disclaimer is a good idea. I think people just stop reading this and it becomes invisable. - John

• By claires
• Posted March 26, 2009 at 9:06 am
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I'm sure you have your reasons, but I have used posts about controlling the tarceva rash to forewarn me as to what to expect and what to do. ALso, I have passed on information given to me by physicians, relatively innocuous stuff, like using polysporin to control nosebleeds. This kind of concrete information seems really valuable since I and the others are not selling but reporting something that works.

• By Maureen
• Posted March 26, 2009 at 9:30 am
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Hi, everyone. Thanks for all this great feedback. I am Director of Patient Services at LCA and am here to tell you the support is very much appreciated, and the questions are important.

The decision made about events and products definitely DOES NOT include suggestions for how to deal with things like Tarceva rash and other side effects.

A really valuable component of this community is the sharing of resources. A product that worked for you or your loved one may exactly what another community member is looking for! To clarify, we would not allow someone to actively sell a cream or the like on the community.

Thanks again to all. This community is a vital part of LCA's commitment to the lung cancer community. We understand the importance of awareness and fundraising events and please don't forget that the LCA website (www.lungcanceralliance.org) has a place for posting these.

Maureen

• By jgaynor711
• Posted March 26, 2009 at 9:37 am
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I personally think this is sad because this site is currently one of the best and biggest forums for lung cancer survivors and their families in the US, and by curtailing our ability to share information about awareness building events or products that have decided to support lung cancer, you're muzzling grassroots advocates who'd like to build awareness amongst one of the only communities who'll listen- and who might want to know about things they can do to help change the future of this disease, be it through fundraisers or community vigils.
Also, sharing event information helps build hope among this community that people ARE doing something. We're NOT being ignored, and there IS in fact a movement that they can join.
I agree that a disclaimer could help and also agree that by silencing the community, it feels much like censorship and not a terribly friendly place to visit.
Decisions like this might limit the time I choose to spend here. Sad. But c'est la vie.

• By Christine_D
• Posted March 26, 2009 at 9:38 am
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Well it does sound like my suspicions were right about this. If it does not have to do with the products etc to help with side effects etc, it must be the awareness campaigns that have been talked about recently here.

I guess I just don't understand the reluctance to support something that has the potential to do so much good in raising awareness and erasing the stigma surrounding LC. I find it sad and disheartening to be honest but will abide by the "law".

As for the disclaimer; of course it will be ignored and forgotten but it would be there in the event something DID happen....

I will get off my soap box now.. I wish you all well in your battle

Christine

• By amymaura
• Posted March 26, 2009 at 10:10 am
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Thanks to everyone for your responses. And just to remind you, this is not a way of silencing or censoring. If you look to the right side of this page, at the very top is a link to a clearinghouse of information about events.

And as Maureen clarified, this does not rule out suggestions for products that helped you, such as creams for tarceva rash, or things for nutritional needs or anti-nausea, etc. Bill and Mary Lou and Christine and claires, I hope that makes more sense.

As to Ray's point about for-profit versus non-profit. We absolutely support the non-profit events for lung cancer, which is why we link to the events page for ALL organizations. This decision is a response to the comments we have gotten over time about picking and choosing whose posts we allow and whose we don't.

As to Julia's point, it's not that we are muzzling awareness. As you know, half of what LCA does is advocacy and we have fantastic, dedicated grassroots advocates all over the country. And this link will always show you what events are going on. And for those interested in advocacy, please contact Kay Cofrancesco at kay@lungcanceralliance.org to talk to her about how you can become more active in the advocacy movement.

Thanks again for everyone's comments.

Amy
LCA

• By Steph49
• Posted March 26, 2009 at 10:24 am
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I think it is very sad that people whom are suffering with lung cancer, one of the deadliest cancers there is, are assumed mentally disabled in some way that prohibits them from making decisions for themselves. When I first came to this site I found it very refreshing as people from all over were sharing their experiences, tips and tricks, and giving hope, prayers and encouragement.
Don't get me wrong, hope, prayers and encouragement are important but sharing tips, tricks and experiences is more practical. Personally when I am looking for answers to specific questions I am not encouraged by a cheering squad. I want to know what people are doing, for themselves or their loved ones, that is working for them. If it seems like snake oil to one person but is working for someone else I want to know. If I tell you about a product that is working for me because I am using it and tell you that my doctor approved me using it after he checked it out, I am not marketing the product because I don't make any money off of its purchase. I am simply trying to help someone else. Of course they should have their doctor check it out and see if it is something they can use that may help them. Putting the information out there certainly cannot hurt. For those that believe that medicine has all the answers...WAKE UP! you are definitely dreaming.
This decision seems like a direct censoring based on personal opinion and that is saddening. If I am not able to hear about possible remedies other than some FDA approved medication with dozens of side effects, I will be spending alot less time here.
Shame on you.

• By BetsyT
• Posted March 26, 2009 at 10:58 am
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There is a distinct difference between Soliciting and Advocacy.
I believe these new rules were generated due to a recent "nailpolish post".
Any campaign promoting Lung Cancer Awareness needs to be allowed on our Board-BUT when it is coupled w/ any revenue producing product, it then becomes suspect & questionable.
I appreciate the Mods. for intervening on our behalf to protect against possible predatorial activities.And I fully doubt that any legitimate ADVOCACY on our parts will be silenced.