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blaze100

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Posts posted by blaze100

    Paralyzed diaphragm - anyone?

    in NSCLC GROUP

    Posted

    Hi Kah123, I have lived almost 11 years with this now. I get very short of breath just going up a flight of stairs. Heat, humidity or smoke definitely does not help. I also have trouble walking against a strong wind...it just sucks the breath out of me.

    I've tried lots of things including years of yoga breathing exercises....my right diaphragm has not dropped a bit... so it seems permanent.

    I think the docs do not like to talk about it. Is your chest numb anywhere? Barb

    Ten years out and still ticking

    in LC SURVIVORS

    Posted

    :D:D:D Ten years ago today I got up at 5 am and flip-flopped my way across that cold dark parking lot and into the hospital lobby for my thoracotomy. :D:D:D

    The husband just gave me a dozen pink roses and a happy 10 year "anniversary" card which he annotated into a cancer survivor card. He said the store was completely sold out of the 10 year lung cancer survivor cards. :)

    Barb

    Tarceva vacation

    in LC SURVIVORS

    Posted

    Wow, two nights off and the area around my lips is 99% better! I've been struggling with that for a month and a half.

    Good going ts! Good for you. Sounds like the rest is helping. Barb

    The Stigma

    in LC SURVIVORS

    Posted

    I've had lots of smokers and non-smokers ask if I smoked. I guess smokers are hoping I will say "no" and non-smokers are hoping I say will "yes"? :)

    Maybe the the non-smokers have a loved one who smokes and they are looking for more leverage to help convince them to quit smoking.

    Many of my non-smoker acquaintances think smoking is a stinky habit. They are sick and tired of wading through smokers at the entrances of grocery stores, theaters and rest areas. It makes it harder to generate sympathy for smokers who get LC. Barb

    Insurance companies?

    in GENERAL

    Posted

    Yes, it is the same insurance admin service. They took 8 months to pay my bill at the hospital for surgery, and that was a preferred provider! And I had double coverage because my husband works at the college too. It wasn't much fun having that bill hanging over my head while I recovered from surgery, chemo & radiation.

    I think - maybe I'm totally off - that there is a difference in how they treat cancer claims based on the diagnosis.

    Barb

    Insurance companies?

    in GENERAL

    Posted

    I belong to a self-funded insurance though the college where I work. When I had LC, our insurance was a pain in the you know where. Nothing but a hassle, late payments, denials, impossible to contact, etc.

    Now one of my friends has BC. She is on the same insurance. She says our insurance has been nothing but sweethearts through the whole process.

    Do you think the insurance people treat LC differently the BC too?

    Barb

    Carcinoid tumor RT lung lobectomy-post-Am I crazy......

    in GENERAL

    Posted

    Hi Kermsgirlie, I have some bubbling noises when I lay down flat or on my bad side. The bubbling goes away if I lay on my good side. It's pretty much been that way for last 9 years.

    I have the rubber sounds too. It is like wet gloves sliding on glass. They have a name for it - plural rub I think.

    Did you loose your entire right lung or just part?

    I hope your pain goes away soon.

    Barb

    Stage 2 NSCLC Adenocarcinoma primary lung tumour

    in GENERAL

    Posted

    Hi Christie, The good news is your brain CT was clear and it seems to be confined to just left side. They just want to clean up the mediastinals before they take out the spot on your lung.

    I read about the Chamberlain Procedure at Wikipedia. It sounds like it is a mediastinoscopy. Infections after mediastinoscopy are unlikely but serious. It is strange that you had SOB and heart problems the day after the mediastinoscopy.

    My doctor skipped the mediastinoscopy since it creates extra scar tissue, the risk of infection, and my mediastinals looked OK on CT. But I know it is standard procedure most places.

    I wonder if anyone here has experience with mediastinoscopy infection- you might want to start a new thread to find out.

    I hope you feel better soon.

    Barb

    5+ YEAR LC SURVIVOR AND NOW RIB PAIN

    in GENERAL

    Posted

    Hi Nonni, I have rib pain now and then over the last few years. The pain is near my chest tube scars. It scared me the first time I noticed pain that wouldn't go away, but it all scanned out OK.

    I started paying more attention. The pain went away last summer then returned when I went back to school in the fall. Then I realized I was leaning against the arm of my office chair on that side right where my chest tubes were. :)

    Is your pain by your chest tube scars too? Barb

    Bryant Gumbel

    in GENERAL

    Posted

    While we are on the ignorance topic. Have you guys seen the pink glove dance on Youtube.com?

    I made this short post to try to counter the ignorance, but nobody watches my video. :):)

    Here it is. This is just mortality data for women with breast cancer vs women with lung cancer. But it was interesting to look at. My audio is out of sync because I just have cheap equipment.

    http://www.youtube.com/watch?v=5DJZ087lpHM

    Barb

    PS. Talk about glamorizing lung cancer, did you see that Torino movie by Clint?

    Bryant Gumbel

    in GENERAL

    Posted

    Actually it is probably the large food corporations that also own the tobacco companies, or is it the other way around? They are big customers on the TV advertising and they don't want to raise awareness to LC since everyone closely associates it with smoking.

    Funny how they are so quick to say he is a non-smoker.....just to cover their bases.

    I wish he'd take off his shirt and show everyone what his new body image is after a thorcotomy.

    Barb

    Bryant Gumbel

    in GENERAL

    Posted

    Ok, he certainly has the pathology report back. That must say what kind of cancer it is. So what could it be? He has another kind of cancer that has met to his lungs? Why keep that a secret? Barb

    Bryant Gumbel

    in GENERAL

    Posted

    It sounds like LC to me. He had cancer, it was inside his chest, they took out the tumor and part of his lung, there were some aggressive cells that had escaped from the tumor (i.e., some positive nodes?)

    He's obviously gotten the pathology report back. If it was something other than LC, he'd say I think. What is it, some other mystery kind of cancer living in his lung?

    It seems he can't just come out and say he has "lung cancer" because of the negative connotation. Just a crazy, mixed up world.

    Barb

    Pink Gloves Video on YouTube

    in GENERAL

    Posted

    Great little video made by a Portland hospital to raise breast cancer awareness. I really like it, but does breast cancer really need more awareness?

    I wrote in a comment to YouTube last week that more women will die of lc this year than bc, but someone wrote back telling me to "complain" somewhere else.

    I don't get it. Nobody wants to talk about lc or even barely acknowledge that exists. I really don't understand. Barb

    Obama has LC?

    in LUNG CANCER IN THE NEWS

    Posted

    Yes, and these kinds of rags also broke the Monica Lewinsky/Clinton thing. You know the regular press doesn't tell us everything for national security reasons.

    I thought it interesting because Obama has been a bit delinquent on making national decisions. On the other hand, he's been traveling....

    His grandmother died of LC, and his mom died of ovarian cancer?

    Barb

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