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joanie55

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Posts posted by joanie55

  3. update to ER post

    in MEMBER UPDATES

    Posted

    Hi and thanks so much for all the kind words.

    I actually got a more comprehensive diagnasis today, even though I'm still a little confused. I don't have actual mets in the brain. They see cancer cells in the fluid that surrounds the brain. Good news was that there were no cells in the spinal column or cord. This was done through two separate MRIs.

    There is a name for this. I think it's called leptomeringeol metastis

    or some kind of disease.

    The real problem is what do I do next!!

    3 choices so far:

    1) WBR which I really don't like at all . I'm not a candidate for Cyberknife beccause these are not tumors, just cells floating around. (I will check on this).

    2) A clinical trial just for this exact diagnosis. Going to read about it tonight.

    3) some other chemo which I've totally blanked on. I'm very exhausted.

    I'd love to hear pros and cons on WBR from anyone. Also, from people who have gone through trials.

    Thanks so much

    Joan

  4. update to ER post

    in MEMBER UPDATES

    Posted

    Unfortunately I just heard from my doctor. I'm getting ready to go into the hospital. It seems that a little bugger made its way to my brain. Probably was causing my vomiting. They will do some more tests and then decide on my next step.

    They also see some cells in the fluid surrounding my brain. Oh well, back on with the boxing gloves. I really enjoyed my vacation while it lasted.

    Joan

  5. Back in the ER again.

    in MEMBER UPDATES

    Posted

    Well, I got through my daughter's wedding, Thanksgiving and a family birthday party and then Emergency Room when I became dehydrated.

    Yesterday, I had an MRI of my brain done because I have been getting headaches and they don't know why I keep getting dehydrated. I've been drinking (water) and really taking care of myself.

    If this doesn't show anything (hopefully) next stop will be a gastroenterologist (sp??).

    Hope to hear from my doc in the next day or so on the MRI.

    I know I shouldn't jump ahead, but I can't help myself. If it does show something in my brain, what is the best route to go with that? Radiation or Cyber stuff?

    Thanks all.

    Joan

  8. I'm Burning My Wig!!!

    in LC SURVIVORS

    Posted

    Hi Trish,

    I totally remember the first day I went without my wig. My head was freezing, but I didn't care one bit.

    I was also unsure of what to do, but it didn't take me long to decide to color my hair. I've been doing it now for over a year and what really makes me happy is when I need a haircut!

    Congrats.

    Joan

  14. carboplatin/taxol and avastin

    in NSCLC GROUP

    Posted

    That was my exact chemo . Even after I finished the Taxol/Carbo, I stayed on the Avastin.

    My tumor shrunk by 50% after my first scan and I've been stable ever since. I had a slight progression at one point that was handled with radiation.

    When I was on the Avastin I was not allowed to take Aleve because of the bleeding possibility, but other than that there were no significant side effects. A little tiredness and nausea and did manage to become dehydrated. Very important to drink, drink, drink.

    Good luck.

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