-Cheryl- Posted May 23, 2004 Share Posted May 23, 2004 Hey Folks, I attended the 1st National Patient and Survivor Forum today sponsored by Cure magazine. I thought I would share my experience with you. I was hoping to meet some LCSC board members at the forum. Unfortunately, I did not meet narry a one. Did anybody go? I know, I live here in the Dallas area. Your point? Ha! Yes, it was closer for me, but hey I got up this morning at the crack of dawn...and on a Sat. no less. It was worth it though. It was a pretty good conference! I attended a breakout session on Lung & Head/ Neck/ Throat Cancer with Dr. Chandra Belani, and Dr. Barry Levinson presenting. I was least impressed by this paticular presentation though, mainly because the progress offered thus far in lung cancer research is pitiful!!! WE have got to do more as a group to change this. The progress in Lung cancer treatment over the last 100 years has barely changed- the survival rates are not much different!!! It makes me angry!!! It is not acceptable. Anyway- ( Couldn't help the outburst), there was little time allowed for the question answer portion of the presentation, probably because they have no definitive answer for a lung cancer cure. This web site is more up to date on cutting edge treatments, thanks to the plethora of information shared by it's members. I will, however, pass along advances in clinical trials for you to ask your doctors about, or to do a web search on if interested. Targeted Therapies-(Specifically kills tumor cells while preserving normal cells.) *VEGF-Avastin * Iressa *Tarceva *Erbitux *ABX-EGF * Note: I think all of these drugs are like Iressa, they are the new competition for Iressa. They work the same way, so if one doesn't work, nor will the others. Other trials going on in various hospitals: Xyotax, Targretin, Sarasar, and Alimta. No immunological therapies were mentioned until I asked about them. They skirted my question on whether or not the trial will be opening up to include others with tumors only in the lung- like people who have BAC? Dr. Belani is a Lung Cancer Specialist from Penn. I believe, and didn't have much knowledge on GVAX and other gene therapies. However, Dr. Levinson hails from Baylor Hospital, right here in Dallas. There were cancer surivors from all over the world there. Jack talked for a good half an hour with Jerry VanDyke (movie actor), whose wife has ovarian cancer. There were lots of interesting presentations on numerous topics from humor to pain management. I met lots of lung cancer patients and survivors. I printed up LCSC flyers and handed them all out! I actually ran out of them!!! There was a good turn out for the forum- I beieve between 450-500 people! Kathy Latour, the Senior Editor for the Cure magazine, was both delightful and entertaining. All in all, it was uplifting to be amongst that many cancer survivors in one room. Cheryl Quote Link to comment Share on other sites More sharing options...
ginnyde Posted May 23, 2004 Share Posted May 23, 2004 Cheryl, Glad the day was uplifting for you. I felt very early on, (and my original sign on ginnyd shows I joined very early on) that this group of survivors and their families could and should become a strong force for LC advocacy. I think we have the start of a ground swell, it will take time as we build a board of directors (in place), get local chapters in place and become the name for lung cancer. The problem is how, so many of us are fighting this disease with every ounce of strength that we have or as a caregiver, have much less time and energy then we had before, with taking care of our loved one. I used to be a take charge, get the job done person. Earl's illness has redirected my attention and the past few weeks have really drained me emotionally. However, I am ready, willing and able to be a worker bee and help get the word out. Ginny Quote Link to comment Share on other sites More sharing options...
Donna G Posted May 23, 2004 Share Posted May 23, 2004 Cheryl I am so glad you were able to go and what a great idea to pass out flyers about our community here . The last couple of years I have attended The meetings of the Twin Cities Lung Cancer Consortium. I think they have me spoiled. This all day meeting is only about lung cancer. They have speakers from all over come and discuss new research, new trials, new tests for micrometastasis etc. Now I wonder if I shouldnt bring flyers to it! I do believe I am probably the only lung cancer survivor there, but they all take care of lung cancer patients. So glad you shared with us for I had hoped to get some from up here to go but it didn't work out. Donna G Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted May 23, 2004 Author Share Posted May 23, 2004 Ginny and Donna, You are right that this disease is greedy, ad it robs one of their time and energy whether you are a patient or a caregiver. However, anything one can do is helpful. Just think, if everybody did something, whatever they could do, what a force we would be to reckon with! It is empowering to become active in the fight of this disease, especially when cancer leaves one feeling so helpless. I know I can do more. Just some ideas- Who are among the richest and strongest lobbyst in the world? Drug Companies! The makers of cancer treatments need to give back to us!!!!! We need to coherse them into digging deep in their pockets and supporting LCSC. I mean, Iressa is atleast $1500 per person per month!!! We should get them to sponsor us, pay for our brochures, and our promotional items (pens, hats, shirts ect...) We need more volunters to attend events to promote awareness of this disease and this board, creae fund raising events. Tobacco companies would probably get involved to appear as if they care. We cannot put the responsibility off on Katie, Rick, and a handful of people. Common guys, we are 1100 strong!!!! Cheryl Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 23, 2004 Share Posted May 23, 2004 Go Cheryl, Ginny and Donna!!! So well said. And it is true, patients themselves cannot fight as hard in advocacy b/c they have to take care of themselves and this stupid disease drains their energy. However, every little stop counts. My mom agreed to do the Irvine Relay for Life and walk the survivor lap again so I can show her off. And I will have my LC poster up again. I think as a group LCSC has already grown so much. Now we have people giving out LCSC flyers everywhere! Maybe just maybe we can have like a contact activism person from each city or state to get more going. Here is somethign easy to do: buy a t-shirt from LCSC store or PM me with your address for a tote bag. It is soooo easy to promote awareness and this website thatway. It is like free advertising. When I wear my LCSC t-shirt in the mall or grocery store, I get a couple of questions about it and then i am able to tell the story, talk about awareness, etc. I love doing it. My mom doesn't, but I do. She wants to know why i feel a need to always wear the shirt on weekends. I say I like people to ask me about it and I love to talk about it. Wearing it kind of gives a "power" to talk about this disease and promtoe early awareness for all cancers. I got on my colorists case yest, she has not gone for her yearly exam and she was supposed to make the appt. I told her she better have her appt made within the next 5 weeks before I come back and we were able to laugh about it. Wearing the shirt is the next best thing to a big billboard around my body Or a megaphone----get your boobies checked girls! boys, feel your balls! look at your sk i n! are you coughing? I should try that and then get aressted for crazyness Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 23, 2004 Share Posted May 23, 2004 I don't think you can get arrested unless YOU are offering to do the squeezing of said parts.... Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted May 23, 2004 Author Share Posted May 23, 2004 Hey Becky, If I must volunteer for a worthy cause, I want to do the prostate exams! Ha! I wonder if that would get me arrested Andrea....Since I am not a medical professional. Hey, anything that goes on between two legally consenting adults is ethical! Ha! Cheryl Quote Link to comment Share on other sites More sharing options...
Andrea Posted May 23, 2004 Share Posted May 23, 2004 Well here is a way to cover o urselves. We go to a Relay for Life or a cancer event or clinic, we ask to feel prosthetic balls to see what to feel for, just like they have boobs. After that we are educated!!!!!!!!!! And really, it IS providing a public service!!!!!!! I mean the one bad thing about lung cancer, it is hard to diagnosis, you can't feel your lung. But you can feel boobies and balls!!!! Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted May 24, 2004 Author Share Posted May 24, 2004 ANdrea, You just like saying the word "balls." Hee, hee, heee!!! Quote Link to comment Share on other sites More sharing options...
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