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Elaine

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Posts posted by Elaine

    A BIG THANK YOU ONCODOC

    in GENERAL

    Posted

    Boy am I glad you are here! You saw what a mess I made of staging! (But you have to admit that Bruce got his right and left mixed up! I thought only blondes like me had had to think real hard when being told to raise my right hand! )

    If this makes no sense to you, you might visit our Just for Laughs Forum, especially when you are having "One of those days!" I would tell you about member fickle Frank and his continuing saga of bear love, but you kind of had to be there!

    Thanks for taking time to visit and especially to respond.

    elaine

    Kind of a Gross and Stupid Question

    in GENERAL

    Posted

    Ok. if the gross quotient was low, let me step it up!

    Really, the reason I asked is that about three or more years before DX, I would somtimes cough up clear sputum with some kind of greyish/brown things in it.

    I mentioned it to a Dr. and was told that it was happeining because I had quite smoking and that "smokers always do that". !

    It happened seldomly, but has increased over the past year.

    Since that time I have been asked if I had ever coughed up prulent sputum and I have said no, believing that to be the green/yellow stuff that indicates infection.

    I am writing an article and wanted to make sure this grey matter is not the same thing as prulent sputum, which would mean I had inadvertently lied to Drs since the first time I asked about this symptom.

    I am not sure what I am coughing up, but I have a bad feeling it ain't good....

    A Query from Major Publication Came Back Wanting More!

    in GENERAL

    Posted

    I sent a few quieries out to some publications that accept freelance work.

    One of my "topics" was called "The Stealth of Lung Cancer" and ends up advocating for early detection to be implemented immediately based on the tests done in the 1970s and 1980s used out of date CT imaging. A fairly major national publication has expressed an interest in hearing more about this.

    Most of the article, as I envisoin it will be about the subtle, "silent" and tricky nature of the disease and how early signs are overlooked or shrugged off.. Probably all cancers are somewhat "stealth bombs' but I don't know that much about them.

    For example, if I go back three years, I can tell you that I did have signs and symptoms, some of which I did report to Drs. and some were so everyday that I didn't think much of it. As a matter of fact, my right shoulder scapula area has hurt going on 20 years. Non-progressive or if progressive, then ever so slightly until recently.

    Another example is that my feet and then hands began to fall asleep more often than usual and for no apparent reason well-over a year before DX. When I mentioned this, I was told that it couldn't be anything, as if it were diabetes it is a late symptom of diabetes! I now know that it, coupled with other things, proves it certainly was a symptom of a paraneoplastic syndrome almost exclusive to lung cancer.

    Ever so often I would cough up clear sputum with some kind of brownish grey material in it. I was told that it was because I had stiopped smoking

    and/or that smokers always do that!

    My list is long and I don't mean to bore you with it now.

    Anyway, I have not been offered a contract YET to do the story. If accepted it would be a feature story since I can't really do an unbiased story due to my own involvement. I can either write this as a profile of myself, but I think it would be better if I had other examples.

    If anyone here also believes, retrospectively, that he or she or a loved one did, in fact, have symptoms or signs over a year before DX, and would like to be interviewed for possible inclusion, please let me know.

    You do not have to have went to a Dr about the condition, but if you did that is fine.

    This is not a story about horrible doctors! This is not a story about how we have been mistreated!

    This is a story about how subtle things can be missed and that early screening will benefit all.

    I do believe that early screening will eventually be accepted, but in the meantime maybe someone will read the article and notice some of these signs and have their cancer caught early.

    I know that many of you did not smoke and thus I don't know that early screening for smokers and ex-smokers will be of benefit to you or not. I am sorry for that.

    If you would like to be interviewed, probably by phone, please let me know.

    If you would like to suggest other things to me about this proposed article or a different way I could go with this, also let me know.

    All feedback and constructive criticism would be appreciated.

    If you are absolutely certain that you or your loved ones had NO signs or symptoms, AND you have medical records that show you had no abnormality on lung function tests a year before DX for NSCLC, I would also like to talk with you.

    Deadline to contact me is OCT 1.

    elaine

    Question

    in GENERAL

    Posted

    Mark

    I just tried reading about the intraocular melanoma, but I couln't make much sense of it. Pls ask your father if he will sign a release so that you can talk to his Dr.

    I am so sorry you are having such a hard time right now, after losing your mother.

    elaine

    Question For Oncodoc

    in GENERAL

    Posted

    Oh my, I am so sorry. I did think that anything over 3cm was stage II. As a matter of fact, that is what I was told based on my chest xray alone--that I couldnt be less than a II because of tumor size. Just another one of my glorious Drs incompetence.

    Ry, Pls fine me for practicing medicine without a license!

    Well, this leads me to another question. If the lymph nodes were involved before radiation and chemo but if radiation and chemo kills the cancer in them, and at surgery, they are found not to have evidence of disease but they lit up on a PET scan previously, how is staging done?

    Thanks

    elaine

    PS

    Bruce, you also might want to edit your profile because you say you had a tumor in your right lung, but your left lung was removed!!! That sounds like something the Doctors here in hickville would do!!!!!

    Question For Oncodoc

    in GENERAL

    Posted

    Bruce.

    Pathology reports aren't used to stage, well, they are in the sense if they say which and how many lymph nodes are involved.

    Based on the size of the tumor,you are at least a Stage II, and then if there was lymph node involvement, it would be some kind of III. It depends on which lymph nodes were involved (where they were located)

    So if you know the location of any node involvement, if any, I think the Dr. could give you a better idea.

    The important thing is that you are NED. You now have a new middle name. You are Bruce NED.

    Good to meet you!

    elaine

    Prayers for Dadstimeon

    in GENERAL

    Posted

    I just happened to read Rich's updated profile, and I see he has had some tough times this past two months. I am so sorry and feel so bad that I had not noticed this before.

    Rich, please know that you have been in my prayers and in the prayers of many over all this time. Please let me and us know if there is anything else we can do.

    love and fortitude

    elaine

    Unbelieveable !

    in NSCLC GROUP

    Posted

    HI

    Weird, but yes I have that and Bill reported his wife has it, too. He called an involuntary gasp, while I described it like the thing babies do after they have been sobbing. My Dr told me it had something to do with oxygen and Bill's told him it had something to do with the tumor hitting the diaphram or something, which would not make sense in my case , I don't think, based on where my timor is.

    Hope this helps. I don't do it a lot either and what is weird is that I don't do it when I am active only when I am sitting, I think.

    elaine

    Unbelieveable !

    in NSCLC GROUP

    Posted

    Bill

    I just remembered a post you made about frequent yawning as being a possible symptom of brain activity. What did you ever find out about that? Just wondering as I had never heard of that and plus wondering about your wife.

    elaine

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