joanie55 Posted December 11, 2006 Share Posted December 11, 2006 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 Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 11, 2006 Share Posted December 11, 2006 I don't have answers, but am wishing you well. I am sure some answers will come along soon. Lisa Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted December 11, 2006 Share Posted December 11, 2006 I don't have answers for you either, Joanie, but wanted you to know I'm praying you get them soon and your problem with these pesky cells is resolved. Joanie ((())) Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 11, 2006 Share Posted December 11, 2006 Joan, This sounds like a good question for Dr. West. Praying for the best for you. Carol Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 11, 2006 Share Posted December 11, 2006 I haven't heard of this either. Hopefully Dr. West has an answer. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 11, 2006 Share Posted December 11, 2006 Sorry, I like the rest, have no answers, but lots of prayers coming your way. If you find out more info please let us know. Quote Link to comment Share on other sites More sharing options...
chrissy63078 Posted December 11, 2006 Share Posted December 11, 2006 I would think that if they found cells it is not yet considered mets. I know with my mom they did a blood test to check for circulating cells. The test came back negative, but they are giving my mom chemo anyway because the doctors still believe she could have cancer cells. Quote Link to comment Share on other sites More sharing options...
mitzu Posted December 11, 2006 Share Posted December 11, 2006 My Dad also had leptomeningeal carcinomatosis, cells in his spinal and brain fluid, but no actual mets. The symptoms were severe vomiting, and difficulty walking. They did spinal radiation (he also had back and leg pain), and they were planning on doing chemo (Topotecan), however he was too weak to do chemo. Topotecan passes the blood-brain barrier. What kind of trial did they recommend for you? I'm praying for success. Quote Link to comment Share on other sites More sharing options...
Ann Posted December 11, 2006 Share Posted December 11, 2006 Joanie, I don't have any info on this but I do want you to know that I'm thinking good thoughts for you and saying prayers! Quote Link to comment Share on other sites More sharing options...
Kasey Posted December 11, 2006 Share Posted December 11, 2006 Well, Joan, you already know that I know nothing about this ! Now, that being said, this is my thought about those cells. I THINK that it is something different than what would eventually form an actual met. My reasoning is......if these cells would, at some point, form an actual tumor, don't you think there would be LOTS of people with these cells waiting to 'form' into something? From all I have read, when people have brain mets, they are mets right off the bat. Boy, I'm not explaining very well, am I? It seems that lots of people would be dx with these cells and I don't think that is the case. Therefore, my extensive medical training ( ) leads me to believe these cells wouldn't form together. Oh geez, Joan, I am going to give up. I will be anxious to see if someone actually knows something. For sure I don't ! XOXOXO, Kasey Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 11, 2006 Share Posted December 11, 2006 You crack me up Kasey. Oh well, you tried Quote Link to comment Share on other sites More sharing options...
joanie55 Posted December 11, 2006 Author Share Posted December 11, 2006 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!!! Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 11, 2006 Share Posted December 11, 2006 Joanie, the logic I would apply would be in line with Kaseys, but I'm a just CPA, so I wouldn't trust anything medical in my hands. Sorry about the trial not working out BUT at the same time congrats on the trial not working out...a more established treatment course will be followed instead and you'll get this taken care of that way. Continued good thoughts and prayers for you. Quote Link to comment Share on other sites More sharing options...
Kasey Posted December 11, 2006 Share Posted December 11, 2006 Why is the trial a no-go, Joan???? Didn't like hearing that ! Can you feel the (((hugs))) from down here in Lancaster, PA???? XOXO, Kasey Quote Link to comment Share on other sites More sharing options...
dchurchi Posted December 11, 2006 Share Posted December 11, 2006 Sorry about the trail did they give you a reason? Quote Link to comment Share on other sites More sharing options...
Don M Posted December 12, 2006 Share Posted December 12, 2006 Joanie, I have hesitated replying, hoping that Dr. West would. I think you should go to his blog and ask about your situation. I guess it must be good if it has not gone into your spinal fluid. Don M Quote Link to comment Share on other sites More sharing options...
enyaw061032 Posted December 12, 2006 Share Posted December 12, 2006 Hi, Joanie: Your case sounds pretty confusing. Praying they will treat you and zap the ugly monster out of you. Why would they not give you a trial medicine chance? Barb Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 12, 2006 Share Posted December 12, 2006 Sorry it's a no go on the clinical trial. Praying an effective treatment will be given and get rid of those cells. Lots' of prayers coming your way... God Bless, Karen Quote Link to comment Share on other sites More sharing options...
joanie55 Posted December 12, 2006 Author Share Posted December 12, 2006 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 Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 12, 2006 Share Posted December 12, 2006 Joanie, cyberknifeforum.org/support Quote Link to comment Share on other sites More sharing options...
MEA Posted December 12, 2006 Share Posted December 12, 2006 Joannie, Thinking of you and praying for an effective treatment. Mary Quote Link to comment Share on other sites More sharing options...
pammie Posted December 12, 2006 Share Posted December 12, 2006 We have a friend who has cancer in his brain, not mets. They put some chemo wafers in the area to inhibit cell growth. He is going to Duke University for their trial program. They seem to have several options for treatment there. Praying for you Joanie. pammie Quote Link to comment Share on other sites More sharing options...
Sue C Posted December 15, 2006 Share Posted December 15, 2006 Joan, I'm still finding my way around here and just read your post. I'm so sorry to hear this. We'll keep you in our prayers. Quote Link to comment Share on other sites More sharing options...
eppie Posted December 16, 2006 Share Posted December 16, 2006 JOanie! Big hugs and big bat to whack those cancer cells. Praying that this plan brings the healing you need. Eppie Quote Link to comment Share on other sites More sharing options...
ernrol Posted December 16, 2006 Share Posted December 16, 2006 Joan, Will keep you in prayer. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
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