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joanie55

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Posts posted by joanie55

    New member; partner with NSCLC

    in INTRODUCE YOURSELF!

    Posted

    Hi Gloria,

    I'm another Stage IV who was on the taxol/carbo with Avastin for 6 months. I've been kept on Avastin after chemo and will be on that indefinitely.

    I can answer any questions you might have about Avastin.

    I also had a 50% reduction after chemo of my tumor and have been stable since then.

    Best wishes,

    Joan

    Back From the Big CIty!!

    in ADVOCACY

    Posted

    Hi Jamie,

    It was fabulous meeting you and your husband. It was just worth everything having lunch with ya'll. (did I say that right?)

    Gotta let me know when your back in town and you're right, those cabbies are insane!!

    Joan

    Water, Water, Water!!!

    in GENERAL

    Posted

    I can't begin to tell you how I found out the hard way the need to stay hydrated.

    As some of you may have heard, this past week my first grandchild was born. I stayed at my son's apartment to help out for a few days. I've been feeling great and thought nothing of holding my new baby and helping as much as I could. My eating schedule wasn't quite as I'm used to and I certainly wasn't drinking enough water. I had the best afternoon, meeting Jamie Y, Bunny and Alisha for lunch

    Well, Friday night I had a slight headache and went to bed very early. I awoke with a headache again, took tylonol and went back to sleep. I couldn't eat and kept sleeping. Well, p.s. I would up being rushed by ambulance to the hospital. I felt like my head was going to explode, couldn't keep down even water. I don't ever remember being in so much pain.

    After a CT scan and MRI, thank goodness it was determined I'm still a member of the empty head club. It seems that because of my slight change of routine, I became dehydrated. I never, ever knew that we should all be drinking 8 bottles of poland spring (which I think is 2 quarts).

    Just wanted to pass this along, how important it is that we all drink WATER. Also can be juice, but anything carbonated will dehydrate, as will coffee and even tea. Even seltzer will dehydrate.

    Home again, drinking water by the gallon. I'll probably float away shortly, but at least without that head pain.

    Take care all.

    Joan

    It's good to be alive

    in NSCLC GROUP

    Posted

    Hi Mary,

    I totally know the feeling your describing. I'm so happy to see that you've made your year. I'm right behind you and hopefully, next year we'll celebrate our second year together.

    All the best.

    Joan

    First Time Grandma!!!

    in HOPE

    Posted

    When I got sick last May, the first thing my son & daughter-in-law said to me was "we're not waiting, we're having a baby".

    Well, little Ella Rose arrived on Tuesday, 8lb, 4 oz.

    She's beautiful and healthy. Can't ask for more than that.

    Best wishes to everyone.

    Joan

    Avastin

    in NSCLC GROUP

    Posted

    Hi Don,

    I've been on Avastin for almost a year now. I haven't had any side effects from it at all. I took it every 3 weeks with my chemo to start for 6 months and have taken it once a month since then.

    Wishing Lucy so much good luck with this.

    Joan

    P.S. my insurance Blue/Cross is covering the cost. also, United Healthcare covered it last year.

    I'm New

    in INTRODUCE YOURSELF!

    Posted

    Hi Lori,

    Welcome. It will get better, once you receive your exact dx and have a plan of action. Having that plan really helps. It will help you focus instead of just having that feeling of panic. There are better treatments today than ever and a reason to be optomistic.

    Looking forward to getting to know you better and hope we can be lots of help.

    Joan

    First Round of Chemo Over

    in INTRODUCE YOURSELF!

    Posted

    Barbara,

    I have to say, you just sound great and that's so important when going through what we are. They do say a positive attitude makes a big difference, and wow I feel that coming through my computer.

    Congrats on the wedding.

    Don't you just love that you stopped your friends from smoking.

    Looking forward to hearing more good stuff.

    Joan

    New and Confused

    in INTRODUCE YOURSELF!

    Posted

    Hi Bubba Beth,

    Kasey is so right. Nobody knows how long any of us have. Especially the docs. Once you get started with a treatment plan you and your dad should feel much better.

    You should enjoy every day no matter what, which everyone should always do. One thing about LC is that I think it makes you appreciate the little things.

    Anyway, lots of smart people here, so ask away with your questions.

    Joan

    re:New and Not Doing Well

    in INTRODUCE YOURSELF!

    Posted

    Hi Judy,

    Welcome. I know how hard this must be for both of you. I've been on Avastin since May, 2005. It's worked well for me and has kept me stable. Also, no side effects (yea!). Doctors, from what I've seen, aren't usually the most optomistic bunch, but you really need to remember that they don't know everything, especially when it comes to LC, unfortunately.

    What we need to do is keep on going, until they find the next wonder drug, or hopefully cure. Eventually that will happen and we just need to be here when it does.

    I wish you both well.

    Joan

    Hello

    in INTRODUCE YOURSELF!

    Posted

    Tracy,

    My post got lost, but I'll welcome you again. I was heartbroken to hear your dx from your aunt Kasey. I want to wish you so much success in your treatment. I am a stage IV survivor and yes, Avastin is wonderful. Ask your doctors about that one. Also, the "Chicken Soup" book is excellent. A friend gave it to me when I first got sick.

    Having a supportive family is half the battle and you've won that half. Now Tracy, only l/2 to go. You can do it. We're all here to help you.

    Joan

    Radon

    in NSCLC GROUP

    Posted

    Thanks for posting. This is such important information. My children will be buying their first homes soon and I'll make sure they check this out.

    We never would have thought to do this.

    Joan

    Odds and Ends

    in GENERAL

    Posted

    Carleen,

    I've been on disability since last May. First, from my employer (short term) and then (after a 6 month wait) started receiving SSD. Yes, I did get approval quickly from SSD, but there is still that 6 month wait unfortunately. I also have long term disability from my employer. They minus the amount I get from SSD. Any employment income also gets deducted.

    You need to look closer on line as far as will they let you earn anything at all. I might have seen a small number there?? not sure. Remember, they are looking for a severe disability for it to be considered a disability.

    There can also be family benefits and survivor benefits.

    I'll go check further for you and get back.

    Joan

    New York bound

    in ADVOCACY

    Posted

    OK, New York gurls, lets figure this one out. Jamie likes the 28th. Italian food. Can we all make that date? Let's all think of our favorite NY Italian restaurants. Maybe one around Times Square?

    New York bound

    in ADVOCACY

    Posted

    Hi Jamie,

    Another New Yorker here. When are you coming in? I'd love to get our New Yorkers together for a lunch or even brunch.

    There is so much to do here. Must see Times Square. Should take a horse & buggy ride around central park. There are many site seeing buses depending how much time you have here that will enable you to do & see a lot more. Fifth Avenue is fabulous!

    I can also recommend great restaurants. Let me know what kind of food you like. Trendy, romantic, etc.

    You will definitely have a great time.

    Joan

    Feel free to pm me if you'd like

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