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PXA to leptomeningeal metastases

jmac4585
Posts: 11
Joined: Feb 2013

My wife was diagnosed with pleomorphic xanthoastrocytoma which was discovered and resected back in dec 2012.  All jan and feb she was having neck and back pain.  Finally they all agreed it had metastasized in her spinal fluid.  She received whole brain and spine radiation for 6 1/2 weeks.  That ended about a month ago and today is her first post radiation MRI.  Please say some prayers and cross your fingers for good results.  Thank You.

Susan M.
Posts: 8
Joined: Feb 2013

Prayers are on their way to you and your wife.   

jmac4585
Posts: 11
Joined: Feb 2013

Thank you for the prayers, no results yet.  On may 10th we get them.  She had a lumbar puncture to test her CSF yesterday.  Her protein level is a lot higher than before the radiation.  Does anyone know what that means???   I just saw the results on the patient website, haven't spoke with a doc yet.

jmac4585
Posts: 11
Joined: Feb 2013

My wife is going to be put on Zelobraf.  It is an FDA approved drug for melanoma, but the same mutation is in her tumor so they see that as the best route to start next.  Just waiting for it to get approved and then she will start it.  Also the MRI results were decent, not too much more growth, and actually a little bit of receding on the tumors "coating" her brain. 

Has anyone else ever taken Zelobraf or any BRAF mutation drug???

debidoodle's picture
debidoodle
Posts: 1
Joined: Feb 2013

My daughter has what your wife has.  She is 38, and was diagnosed with stage four breast cancer when she was 32.  She even went into remission for a couple of years for which we are grateful.  At first it was four tumors in her brain when it came back.  We were lucky that the gamma knife and radiation seemed to take care of them.  Then this past Christmas during a routine MRI we were told about the lepto.

She's not doing very well right now, but I will continue to hope and pray for her and your wife.  I hope you guys got good news.  It makes me so angry that not one doctor told us that regular chemo does not cross the blood barrier to the brain.  You think as long as they have done the chemo and radiation, they will be okay; but I guess insurance companies don't won't to pay for monthly mri's.  I don't know, but I wish I had known then what I know now.  I would have sold my house and all of my belongings to get her tested if it would have helped.

 

jmac4585
Posts: 11
Joined: Feb 2013

Thanks for the reply, she has been scaring me lately, talking gibberish and not making sense.  two days ago she could only say "yeah" and no other words.  But she started that BRAF drug yesterday so we are hoping to turn this around.  I hope your daughter improves too, I will remember you all in my prayers.

jmac4585
Posts: 11
Joined: Feb 2013

Got a good report a couple of weeks ago!  Zero cancer cells were in my wife's spinal fluid and the tumors coating her spinal cord are no longer visible on the MRI.  The other tumors are also shrinking and we just finished tapering her off of decadron.  She was down to 76 pounds in early June, but up to 92 pounds as of today!  She is sleeping a lot better too, I think being off of the decadron will start helping with a lot of other things.  Praise God!

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