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Everything posted by joanie55

  1. Hi Arron, Yea, the eyebrows were definitely worse than the hair loss. You probably look realy cute bald, as opposed to a bald women. (no offense to bald women, they are cute too). I went to my neices wedding with drawn on eyebrows. NOBODY knew. I also used eyeliner which helped with that martian look. Just go, feel good and dance. I'm sure everyone will be so happy to see you they will never notice what you do. Joan
  2. ANN, She's beautiful!!!! I also have an "Ella". thanks for sharing. Joan
  3. Hi Sue, Not sure how to answer your questions, but would just like to say welcome and hope we can be of some help. Joan
  4. Where do you get it? I've wanted one for ages. Joan
  5. My doctor uses radiation for pain control. Is she in any pain? Joan
  6. Hi, Spoke to all my docs before and it seems there was a blockage that if they hadn't found, could have been very bad, if they had gone ahead with the trial. So, now everyone seems to be leaning towards WBR. I'm not a candidate for cyberknife. Can someone (Don?) send me that link where you can ask cyberknife questions. Thanks. Trying to figure out how to ask Dr. West. SIgned up, but with everything going on I haven't figured it out yet. Joan
  7. HI Tracy, What wonderful news!!!! Avastin was great. No side effects and really worked. You go gurl!! Joan
  8. 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!!!
  9. 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
  10. Glad she's going to the ER. I'm sure they will get to the bottom of this. Maybe she needs to have an MRI done to see what's going on. Good luck. Joan
  11. 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
  12. 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
  13. Cindy, Congrats!!!!!! That is some good news. Keep up the good work. Joan
  14. 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
  15. Too fast, too young and way too sweet. My sincere condolences to his family. Joan
  16. 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.
  17. joanie55

    I miss Bunny

    OH BUNNY, What a happy post for me to see first thing in the morning. CONGRATS!!!!!!!!!!! Let us know when your home. Joan
  18. Thanks, I love healthy soups. I'm definitely trying this.
  19. joanie55

    I miss Bunny

    HI BUNNY, I miss you too. We've got to start working on next year's walk. Joan
  20. What great news!!!!! You deserve a break. I'v e also spoken to my doctor about slight reschedules and he totally agrees. Maryanne, Joel, just go and ENJOY ENJOY those holidays. Joan
  21. Hi Trish, Glad to see this post and I do think of you guys often. So glad Jeff is doing so well. I too, would like to know the differences between IGRT AND IMRT. It's such a crazy disease. Don't you Wish there was a one size fits all solution!! Keep up the good work. Joan
  22. Donna, Congratulations and most of all, Thank You, for standing by to help us all. Joan
  23. joanie55


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