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Elaine

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Posts posted by Elaine

    Where's bean_si??

    in GENERAL

    Posted

    Cat,

    Sounds good except for the life insurance and the bill: :evil:

    This next month should give you time to research your exact DX and find out the best way to treat what you have. I posted a post about a place where if you have your pathology report you can either send them the reoport and they will translate it into plain English for 50.00. However there is a wealth of info on the site and it looks like you should be able to use the info there to "translate" it yourself.

    Good to see you on board for a bit.

    love

    elaine

    Ports, Infections, Blood Clots

    in GENERAL

    Posted

    Tina

    What a tough time Charlie has had. We all know that mistakes happen but medical mistakes are really significant and can be so harmful.

    I remember that you were looking into trials. Maybe this is a good time to pursue that avenue again. Don't give up trying to get what YOU and CHARLIE want as far as care.

    Praying hard.

    elaine

    Questions about edema

    in NSCLC GROUP

    Posted

    I have had no chemo and recently developed edema in both calves, ankles and feet. I went to ER and they coujld find no cause but gatorade has kept it pretty much in check. I, too, an worried about this latest development because it can mean a lot of things. Margaret, I hope you get it checked out. One thing though is that the location you speak of doesn't seem to be the location that edema from cancer progression would assert itself--so that's a GOOD thing!

    elaine

    Stoping chemo?

    in GENERAL

    Posted

    Bo

    You and I are kind of opposite places. I chose no chemo while I was feeling good and took many things to strengthen my immune system to not only fight the cancer but to get strong in case I decided to do Chemo or rad. Over the past 4-6 weeks I began to experience fatigue--no weight loss, just tired. Other than that, I feel better than at DX and had no chemo. Scans three months after DX showed microscopic progression--nothing really.

    I just feel there has been progression lately. A little less stamina and a little more SOB going upstairs and exertion in humidity.

    I don't know what you were told, but I was told no chemo would cure me or give me more than 3 months or so longer than without.

    They also could not rule out mets and still haven't ruled any out nor in either. I go again within three weeks for further tests unless I just decide to stay on the path I am on.

    One thing I want to caution you about is this: The feeling of denial is very strong especially when I am feeling good. On days I feel bad it's not hard to be confronted with the fact that my body and the meager supplements I am taking are not really curing me, they aren't hurting me, but ....

    Bo, I wish I had the answer, but I don't.

    I hope Dean chimes in here. He is on this road and more committed to it than I am. I don't really know how he is doing now. Last he posted he had started morphine, but I don't know for what kind of pain or for what symptom.

    The only thing I can say is that I still have my hair, I still don't need oxygen and take very litttle in the way of meds. Most days nothing.

    The timeline they gave me at DX was 3-6 months without treatment. I am just about at 6 months now.

    elaine

    Any suggestions?

    in SCLC GROUP

    Posted

    Addie,

    The reason I asked is that John Just posted this info on clinical trials this morning, so I wasn't sure if just anyone could get the treatment:

    4) Subcutaneous Amifostine (Ethyol®) In The Prevention Of

    Radiochemotherapy-Induced Esophagitis And Pneumonitis In Patients With

    Unresectable Non-Small Cell Lung Cancer. This study is being conducted in:

    - Baltimore, MD (http://www.centerwatch.com/patient/stud ... 60920.html)

    - Baltimore, MD (http://www.centerwatch.com/patient/stud ... 60921.html)

    - Baltimore, MD (http://www.centerwatch.com/patient/stud ... 60922.html)

    - Bethesda, MD (http://www.centerwatch.com/patient/stud ... 60919.html)

    - Camden, NJ (http://www.centerwatch.com/patient/stud ... 60924.html)

    - Houston, TX (http://www.centerwatch.com/patient/stud ... 60930.html)

    - Lexington, KY (http://www.centerwatch.com/patient/stud ... 60918.html)

    - New Hyde Park, NY

    (http://www.centerwatch.com/patient/stud ... 60925.html)

    - New York, NY (http://www.centerwatch.com/patient/stud ... 60926.html)

    - Norristown, PA (http://www.centerwatch.com/patient/stud ... 60928.html)

    From another angle

    in HOPE

    Posted

    Larry,

    Well the third one is a bit confusing and I probably worded it wrong. I think he meant that anything we can imagine must be a possiblity or else we could not have the thought. It is comforting to think that if we can imagine a cure for cancer then it can be. It is also comforting to believe that we will be with our loved ones after death. I can imagine winning a million dollars, but I doubt that will ever happen--but it IS a possibility.

    I think the thing the three "ideas" have in common is that we may be looking at illness in such a way that we wont find a cure unless we can adjust our thinking.

    Imagination and science have a long history. Think of how many discoveries were made with the aha! method then put to test with the scientific method--most all. Thus, if we take away art and music from our schools, are we ensuring the imaginations of our children are going to be so limiited that science will struggle more. Also television in the past has done little to foster imagination--quite the contrary.

    Lakotas believe that for every ailment there is a cure in the environment. I hope that still is the case despite the many thousands of species that have been destroyed on this earth in just the past hundred or so years.

    Their "doctors" are also their spiritual leaders. Prayer is combined with medicine in a totally inseparable way. There is also a different attitude toward death. There is less fear and more acceptance. It's hard to explain. But mainly that life is a circle. We go back to where we came. We are not moving linearly towards old age and death, but we are moving toward our beginning. We may say we believe that, too, but as a society we do all kinds of things to avoid growing old as if it is something to be feared instead of welcomed.

    The fact that humans are the youngest of all living things should make us feel humble in face of the environment instead of feeling superior to the rest of nature and trying to conqueor it and rob it of its gifts. Traditional Lakota belief says that all things, not man made, are alive and have spirit. Thus each thing has a lesson that we are to learn from it. If we ignore that which surrounds us and don't observe it, then we don't learn what we need to learn. Worse if we destroy that which surrounds us, the lessons and cures won't exist.

    I think the point I might be getting at is that industrialized societies need to "learn" a little bit from indigenous ways of thinking and being in order to solve the problems that face us, problems we have caused in many ways with technology and greed.

    I hope I am not sounding like some "new age" person because I am not. The new age movement has distorted these thoughts and made them into something almost laughable--crystals and stuff. These ways of looking at the world are imbedded in the traditions and place and persons. I can't begin to really decribe with OUR language that which just "is" within another culture.

    As for the stories of American Indians. I have done a little reading on that and one thing a person must beware of in looking at stories is whether the story originates prior to missionaries or not. And how the stories changed after the missionaries came to the reservations. It's really fascinating.

    elaine

    Effusions and Metastatic Disease

    in GENERAL

    Posted

    Cheryl

    I or someone recently posted an article about trials that were using Iressa as first line treatment and that it was showing very good results. Also none of the traditional chemos are providing cures, that I know of, so I am wondering why they are saying what they are saying. Is it because they get a cut of the chemo dollars and not the Iressa dollars???

    I hate to be so cynical, but.....

    You are going to beat this Cheryl.

    elaine

    Effusions and Metastatic Disease

    in GENERAL

    Posted

    Cheryl

    No answers really, but I guess questions. I thought they drained the effusions. Didn't they biopsy them?

    I thnk the feelings you have are so normal, but when you begin to see results you will be better. Also try to find glory in all the things you can do. Your cancer can be beat. It may have to be treated chronically until a cure comes along, but you are strong with a lot of fight in you.

    I suggested once that you get to know those monsters in the basement. Maybe others thought this was bad advice. But I think you can't fight the enemies you don't know. Besides the cancer, there are other "enemies" inside us that weaken our resolve. Maybe take this time to find the weakness in that which weakens your resolve, so you can fight the cancer better in the coming days. Poke holes in its arguments. SOon you will find its not that powerful of a monster because of all the good you have on your side.

    Love to you

    elaine

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