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Old 02-21-2013, 10:58 PM   #51
evlin75
Senior Member
 
Join Date: Sep 2007
Posts: 118
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I certainly wish much success to all who are doing the IT treatment for spine mets, but my daughter is having a very rough time right now.
She finally got up to 80 mg the last treatment before the new ommaya was placed, but the subsequent MRI showed progression all along the spine. Several spots in the cerebellum, a more prominent area in the thorax and more also in the lumbar region. He changed her treatment to a more toxic chemo Lysomomal Tycaribine (sp). He is concerned that it is getting out of control. He wanted to discontinue the herceptin as it cannot be mixed wth the new medication. I did not agree with stopping the Herceptin so she will get it on alternate weeks. Because this is a more toxic medication, she receives steroids before and after the treatment.
She gets the stitches out of her ommaya site Monday. Tuesday she will be admitted to the hospital for the flouroscopy and the areas in her spine that are grossly enlarged will be radiated. She will also receive her herceptin that day.
I am told she will have to stay overnight for observation. We were so hopeful for the Herceptin but maybe the lumbar punctures were not getting it all into the right area as some were very painful. It is good they can use the ommaya now though.

Ev
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