Linking you to resources and support in the lung cancer community!
My latest rage!
Ok maybe I am still enjoying the renewal process that this time of year brings.
I was just reading the latest edition of my AARP news magazine. It has a big article on how many of us are surviving cancer now compared to 1970. But gee they don't seem to have any statistics on lung cancer. I wonder why? maybe because our stats haven't changed much since then. I am a twelve year survivor but I consider it to be the exception not the rule. As long as we all keep quiet and let the press and the government skip over us like we don't exist we never will matter. When I'm done here I'm writing a letter to this publication and tomorrow I will try to call an educate this publication. Like I said I will try. I hope maybe we all can voice our concerns to anyone who will listen I mean anyone. You know the old you tell two people they tell two people and before long one heck of a lot of people get informed.
More to follow. Let's see if I make a least one new friend before I'm done at the AARP.
John
Views: 121
Replies to This Discussion
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Permalink Reply by John H MOD on -
Well I received the standard thank you for your submission but do to space and so on we can't respond to your letter ect, ect, ect. So I received a form letter reply but it was a reply I guess. Now maybe I'll call and se if I can express my dissatisfaction with the article. Stay tuned I'm not going quietly into the night yet. Haha
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Permalink Reply by John H MOD on
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So I've calmed down and didn't get to anyone who could help me. I give up since I'm just to busy at this time to chase a ghost I can't do it. We'll see if they will at least acknowledge that they needed more facts to back up what they write and print.
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Permalink Reply by GADawg/MOD on -
Get 'em John!
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Permalink Reply by cards7up on
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Hi John, I don't get on much anymore but wanted to let you know that ACS has just published new stats on LC. From what I've read in other posts, the stats are not good. Don't know why. Were these the same stats that AARP used?
Take care, Judy
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Permalink Reply by John H MOD on
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Hi Judy, so glad to hear from you. I hope all is well. The stats they used weren't even real. AARP were making generalizations and using charts to say all cancers are showing so much positive movement and the odds were going more in the patients favor. They lumped lung cancer in the mix. It just really frosts me that they specifically mentioned breast cabncer and how the odds of surviving is so much better now. Which I think alll of us would agree thats so wonderful. But they shouldn't broad brush all of us with lung cancer away like that. Who ever wrote the article should have done some research into the odds. I had calmed down now my blood pressure is rising again. On that note I have to go do some work and take out my frustrations on some other living thiungs besides these ignorant humans . At least the grass and shrubs don't talk back, yet. LOL
John
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Permalink Reply by Ronni on -
I am new SCLC, just diagnosed this past February. Have 3 chemo treatments. But I have read and read and read, and asked questions and listened. from what I am gathering there has been nothing new in over 20 yrs., treatments are the same. My oncologist, in his hey day, was involved at a time when things were progressing and research gave answers. Don't know what happened to science since.. but he said SCLC is something that reoccurs, isn't as treatable as other types and he is open to clinical trials...... we are looking now.
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SCLC is one of the most controversial cancers. It is so involved that trying to find new treatments is very hard. I've read some good articles and it's not that research is not trying, it's just that SCLC is much more complicated. I beleive they're doing a clinical trial now on a vaccine for SCLC. You'd have to check the clinicaltrials.gov site.
John, I don't read or listen to anything ACS or AARP has to say about LC. Someone had poste do Inspire that ACS also came out with new stats and the LC stats were not good. I don't even care to check it out. As long as those living things aren't breathing and have two or four legs, go to town!
Take care, Judy
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Permalink Reply by Ronni on
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Waiting for results of latest blood tests to move further on CAT scan with and without contrasts. Talked to onocologist, who has lost his zest, about clinical trials, his interest was yes try them. etc etc. Insurance getting ready to change, wait for that he said.
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Permalink Reply by John H MOD on
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Hi Ronni, I'm not sure of how an oncologist wouldn't be excited to have you looking into a clinical trial. That is where the newest procedures and Meds are tested. I m not sure about insurance requirements for the trials. I didn't think they charged you. I could be wrong as my wife would swear to that I usually am. Lol
And Judy I agree with you on those two opinions on statistics. All I know is I'm still here and I have no clue why but neither do the docs. We just gave to keep putting one foot in front of the other.
John
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Permalink Reply by Ronni on
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Hi John. Cancer Center of America does charge. and the insurance I have they do not take at this time. In talking further with onocologist and pulmonary specialist... I am putting the cart before the horse right now. I have had 3 doses of chemo and soon to get CAT Scan will give progress results. Reading and talking wiht people here.. I am a 'baby' to their long term experiences.
John, I am a true believer that our life is in our Creator's hands. We handle what we are given and from it get character. You are here becus it is not your time. Hopefully you are enjoying parts of what you have.
Ronnie
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Permalink Reply by AmyLCA on -
Hi John - there is a charge for some Clinical Trials. They are all different and a lot of it depends on who is sponsoring it.
It's funny, I think a lot of doctors have mixed feelings about Clinical Trials, unfortunately. For one thing, they will likely lose you as a patient if you enroll in a CT, and they don't want that to happen. Some doctors are also just skeptical that a person in a CT will gain any benefit. That's why so many have the attitude that you shouldn't do a clinical trial until you have exhausted all other options, an opinion that I don't always agree with!
A
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Permalink Reply by Ronni on
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Hi Judy. I don't read much of the stats either. I did in the beginning and found them to be depressing. Talking to doctors and its research, etc., was also. Here I have found people you have out lived them, so I am back to believing life is individal regardless of what one might acquire in it. Promising is the outlook I have. Getting thru this with some type of quality of life is what my doctors have enforced.
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