leptomeningeal treatment with herceptin IT

[evlin75]

My daughter Susan is still being treated with Herceptin IT. Her new ommaya is working without problems. Obtaining some stability of the spinal growths using DepoCyt with the Herceptin. Also using Emend to alleviate some of the side effects. She is getting the recommended high dose of the Herceptin but there is no great reduction of the spine mets, although the spots on the cerebellum are now gone.
Any update from you guys - Marvass and Rolepaul? I wish Nina and Carol the best!

Ev

[NEDenise]

Ev
It sounds like things are going well!
All the best to you, and Susan!
Denise

[Jackie07]

Ev,

What wonderful news! Thanks for the update of your daughter Susan. We will pray for continued success of her treatment.

Marvass has updated the status of Carol on her thread http://her2support.org/vbulletin/showthread.php?t=54229&highlight=marvass

and Rolepaul has posted the update of Nina on his thread here: http://her2support.org/vbulletin/showthread.php?t=57973

[evlin75]

Thanks for the well wishes and links! Susan was diagnosed in July of 2012 so the good news for us is that she is still walking and talking.

Leptomeningeal problems are not easy to handle. The Depocyt has run its course and will be stopped. Then the high dose Herceptin IT continued. She has a couple enlarged hot lymph nodes in her neck that need radiated. She has had some unsteadiness, fell a couple times but is getting physical therapy to help with that.

But anyway - thanks for responding.
Ev-mom of Susan