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CharlieD

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Posts posted by CharlieD

    newbie

    in INTRODUCE YOURSELF!

    Posted

    Hi Shirley,

    Sorry to hear about your father but glad you found us. It sounds extremely strange that your ONC would give up after two Chemo Regimens. Check some of our Bios and you will find many of us have survived years with several Chemos, radiation and new procedures.

    You didn't mention where you are located, but you must be relatively close to a National Cancer Institute.They are the experts and until you get their opinion, you won't know what is out there. They are extremely helpful. ONCs comein many forms, but the experts are at NCCs.

    Good luck and God Bless.

    CharlieD

    TAnn at Peace

    in GRIEF

    Posted

    Don,

    My heart breaks as I read your post. What a classy lady. The Kingdom of Heaven is certainly a better place today after receiving Teri.

    God Bless and comfort Al and his family.

    CharlieD

    Radiation - any info you can share

    in NSCLC GROUP

    Posted

    Kathleen,

    Wow, sounds so familiar. I just finished Brain Radiation a week ago and had the same condition as your Mother. I am also on Dexamethisone, 2Mg X 4 initially and cut back now to 2 Mg. They wanted to keep it as low possible, but I took it on myself to raise it to prevent brain swelling. I'm still exttremely fatigued hoping it will let up soon. I don't think I had it as bad as your Mother. but it wasn't fun.

    How is she doing now? Keep me advised and I'll do the same.

    God Bless,

    CharlieD

    My Mom Cancer Is Worse -- How Did You Cope?

    in NSCLC GROUP

    Posted

    Laurel,

    Really sorry to hear about your Mother. Many of us have been where she is now and dealing with it is really difficult at times. My original diagnosis was almost identical to hers and that was over two years ago. My fluid was drained and never came back due to the Chemo treatments. Did you get a 2nd opinion on whether she should have Chemo. I would suggest a National Cancer Institute which should be relatively close. They are the experts. There is always hope and if there is any out there, they'll know.

    Hoping and praying for you and Mother, as you deal with this beast. We're all there for you.

    CharlieD

    CharlieD Update - WBR X 15 Complete

    in MEMBER UPDATES

    Posted

    Wow, talk about gettin a butt whipping. Severe fatigue much worse than any of the Chemo I've had. Radiation burns on the head, sores in the mouth and throat and numbness in the left hand and arm. However, when you look at the big picture, this is only a rough spot in the long winding road to kickin this monsters butt.

    Docs say it will take a couple weeks to get my strength back. Better be cause bass season opens in three weeks and I know even God Almighty wouldn't want me to miss it.

    Got an MRI in a month to see if it worked. They seemed rather confident that it had, so here's a hopin and a prayin.

    God Bless

    CharlieD

    Keith and Carleen Update

    in MEMBER UPDATES

    Posted

    Carleen,

    Thanks for the update. You have this thing so much under control in your mind. It is truly a blessing that you are so in touch with Keiths soul and

    well being. If we could just all have that.I'm sure your plans will work out. God Bless You and Keith.

    CharlieD

    radiation burn

    in NSCLC GROUP

    Posted

    Hi Don.

    Biafine was given by the Radiation Folks and has really worked well on the ole bald head. Just a little itchiness. Through 10 of 15 WBR. Good luck with it.

    CharlieD

    Newcomer

    in INTRODUCE YOURSELF!

    Posted

    Hi Pat,

    Welcome to the site. Sorry you had to find us but glad you did. I have to make it unanimous for a second opinion. You didn't mention your location but you must be in reasonable range of a National Cancer Institute. These people see nothing but cancer patients and believe me, they'll know if it is cancer. I applaud you for wanting to take care of it quickly, but haste can make waste.

    Just go to the Google Site and type in "NationalCancerInstitutes" and a map will show you where they are located. Click on the closest one and it will give you all kinds of contact info. I did over two years ago and that is why I am under the care of a leading cancer research center at Roswell Park, NY and a two year survivor of this beast and still fighting and doing extremely well.

    If you are lucky enough to have the disease surgically removed, please make sure it is the right thing to do. As you probably already see, this site is the right place for support and to share and learn from other peoples experience.

    God Bless you and keep in touch. We care!!

    CharlieD

    I'm overwhelmed

    in NSCLC GROUP

    Posted

    Teri,

    Great to see you back and dealing with it with your usual positive attitude. Glad to hear you are walking around the house and getting by on your own. You always have been a trouper. God Bless my friend and stay in touch.

    CharlieD

    6 Month CT Follow up After Clinical Trial

    in MEMBER UPDATES

    Posted

    FANTASTIC!!!!!! Stable disease, no progression. Just what I wanted to hear. Would be somewhat more jubilant if I wasn't going through WBR for the Brain Met.(Did manage a Tangueray No. Ten Martini) The WBR Zaps all the energy out of you and the massive amount of steroids to control brain swelling really knocks you for a loop, but ya gotta do what ya gotta do. Git R Done. They seem to be confident that it will do the trick, so bring er on. Got 7 to go out of 15 so we're over halfway. No pain or discomfort, just the fatigue and yucky steroid feeling.

    God Bless

    CharlieD

    Gemzar

    in NSCLC GROUP

    Posted

    Hi Z,

    I had the combo as my first treatment and it worked well. Stopped pleural effusion and kept me stable for almost a year. Side effects were minimal. I had the full 12 rounds. Good luck with it. God Bless.

    CharlieD

    Post-Chemo SOB ?

    in GENERAL

    Posted

    Bill,

    I've had SOB on and off all during my two plus years battle with this beast. The first was rather mild with Gemzar/Carbo, 12 rounds. Then a year later with Alimta, 6 rounds, a little worse for just a few days after each treatment then all hell broke loose after a clinical trial with Zemplar and Gemzar. That was in December and haven't shaken it completely yet, but I've got another battle going on right now with Brain Mets and undergoing WBR. Six out of 15 down and then Gamma Knife if there is any left.

    With the SOB, I just kept walking as much as I could every day and working through it. Docs said it was from the GEMZAR and that it would gradually decrease which it has slowly. Can't really tell now since I'm on a high dose of Decadron but I don't seem to have as much. Hope it helps and good luck with it.

    CharlieD

    It's been a long road.....

    in NSCLC GROUP

    Posted

    Teri,

    Really terribly sorry and saddened about your situation. The fight that you put up has been an inspiration to me. You and your husband are two brave souls. Keep your chin up my friend and God Bless and comfort you.

    CharlieD

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