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joanie55

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Posts posted by joanie55

  1. Hi everyone kind enough to reply.

    Mitzu, yes what your dad had does sound like what I have. I think they will be using liposome cytarabine injected directly into the cerebrospinal fluid space via an Ommaya reservoir that goes directly into my scalp.

    My only symptom was vomiting which I've had a few times before this finally showed up. Otherwise I'm a-symptomatic which I hope will work in my benefit.

    I am going to ask about the chemo your dad would have had. I know chemo usually does not pass the brain/blood barrier, so I find that interesting.

    JUST heard from doc that it's a NO-GO on clinical trial!!!

  2. Some of you may know that I was recently found to have lung cancer CELLS in the fluid around my brain.

    I may be starting a clinical trial this week if I am found to qualify. I'll know on Thursday.

    I'm really curious if anyone else here has ever heard of this. It seems everyone has actual mets that can be treated with Cyberknife or WBR (not what I want).

    I'm wondering if this was just found early and they would have developed into a met. Would that have been easier to take care of????

    Any info would be appreciated.

    Joan

  3. Ursol,

    I know how scary this is. I'm dealing with a very similar situation. But, I have to believe there is hope. There are lots of brain met survivors here and I do plan to be one of them.

    I would definitely check out Don's sites on Cyberknife.

    Like they say..... just breath.

    Joan

  4. I tell everyone I know to run for a spiral cat scan if they have any questions or concerns. I would rather have had a false positive than nothing at all.

    My systom was a pain in my lower back. It would up being stage IV.

    Two of my friends who haven't smoked for 25 years or so have gone in for the spiral cat scan and are now being watched for nodules. OK. Believe me, they are happy.

    Joan

  5. Paula,

    I was on Avastin from May, 2005 until August, 2006. I just found out that I was the first one at Sloan Kettering in NY to be on this drug for Lung Cancer. "Famous"!!

    I was on it in conjunction with my other chemo drugs and then when my rounds were done (6), just on the Avastin one time per month, plus Zometa for bone strength.

    I found it an extremely easy drug to tolerate out of everything else I've been on.

    good luck

  6. Gee Maryanne,

    I have exactly what you're looking for. I'm on long island, a little too far I think, I certainly would have given them to you, but I did get them in a hat store. Lots of cancer patients shop in hat stores.

    Good luck.

    Joan

  7. Even though supposedly, I've been in "palitive" care for 19 months, I definitely have hope for the future.

    The longer I'm here the more new stuff can come along to help me . I'll never run out of hope.

    I think some of this comes with the kind of person you are normally. I'm a very optomistic, but realistic person. If you can't be optomistic with a cancer dx, it may be an extremely difficult mountain to climb.

  8. Bill,

    I have to agree with Jamie that you "are awsome". I think any former smoker can relate to everything you are going through. Remember that the main thing about cigarettes is the addiction. Plain & simple. Yeah sure, I loved em too, but it was the addiction that kept me going when I knew I should stop.

    I wish you and Kim and everyone else who joins you the very best. I'd be happy to help in any way I can.

    Joan

  9. Hi Ernie,

    Yes, we are certainly sort of neighbors. I live in the Five Towns. Garden City is almost my back yard. And Yes, Sloan Kettering is also my hospital. It was just rated as the #1 hospital for lung cancer in New York. That made me feel really good.

    Glad that you are doing so well. Hope to join you.

    Joan

  10. Well, I did make some pretty important decisions today. I clarified all of my options and have decided to go with the Trial. It is the most cutting edge, aggressive way I can go which hopefully will give me the best chance.

    There are two other routes I can take if this doesn't work. But, I feel extremely confident, expecially since I made the decision.

    I have my whole family on here now. My son, daughter and granddaughter. I'm just missing my shy hubby.

    Thanks guys, love you!

    Joan

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