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Missed the GVAX clinical trial--brain lesions


cherbut

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I was to have gotten to participate in a GVAX clinical triel recently but just before it was to start, I developed brain lesions so they have been giving me radiation. Has anyone out there had brain lesions happen? It's been a strange (and kind of scary experience). For about a week there, I could not do some everyday things, like fugure out how to dress right, open up the mailbox or use a can open. I would really like to hear from anyone who has experienced brain lesions.

Cherbut

(Cheryl)

nsclc diagnosed September 2003

PS The good news may be a surgeon recently told me he does not think I am Stage 4 after all.

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I just was found to have brain mets also, yesterday to be exact. I noticed a twitching kind of thing I was having at night when I would be trying to fall asleep. This has happened to me before but it just seemed to be more twitching than normal, I mean the kind of twitching like when you are about to fall asleep and you kind of jump. I don't know if that makes sense to you or not but that is what I noticed. That is not what lead me to get an mri though. I had a retinal hemmorhage in my left eye which I knew the doctor would order an mri after that. Anything that involves the eyesight is an immediate reason to look for brain mets.

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Cheryl,

Darn...GVAX trial seemed so promising. Maybe that's still in the future for you. I don't have any experience with brain lesions...yet, but I'm sure it is scary. Tell us more about how you might not be Stage IV and what that might mean for your treatment.

Take care and prayers for you with this latest wrinkle.

Margaret

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Hi Cheryl,

I'm so sorry to hear that you won't be able to participate in the GVAX trial. Are they planning to do whole brain radiation or stereotactic radiosurgery on the brain? Maybe you can still particape in GVAX after the brain lesions are zapped.

Deb: Same question for you - are you going to get radiation?

Keep the faith!

God bless you,

Peggy

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I am going to start radiation treatment to the brain on Monday. I am hoping it is not the full head type. I would prefer the lesser to the brain at this point. Will let you all know after Monday.

Deb

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