Jump to content

NO mets, just CELLS????


Recommended Posts

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.


Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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 ( :roll: ) 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 :? !



Link to comment
Share on other sites

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!!!

Link to comment
Share on other sites

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.

Link to comment
Share on other sites


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.


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use.