Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases)

[kaiulanis]

Thank you you're the best! Unfortunately, or fortunately, I don't have any symptoms. I just figured my chances are better starting it earlier since it's apparently inevitable. Do the wheels have to be falling off the jalopy before they'll consider it, d'ya think? Pitching my doctor today. Thanks again for your help and all your trail-blazing. I hope your darling Nina is doing okay? Is she still doing maintenance IT Herceptin? NED? SE-free? I'm sure my doctor will ask.

[Rolepaul]

Nina is doing great. We went to once per two weeks for six months and are now at once per four weeks for the past year. She also does IV Herceptin once every three weeks.
NED in MRI scans, PET scan, no cancer cells in the Spinal fluid, with the protein and glucose in the normal range for the spinal fluid. There were no side effects, and steroids were not necessary. We hit the tumors in the spine with radiation before the first IT treatment, but no rad since then.
Nina walks 5 miles per day. She is on the computer, reading books, and helps her mother with her daily activities. She is able to drive, get on the plane to Houston for IT treatment, and make critical decisions on her own. She is looking at restarting work with either RN or Massage Therapy, as she has license in both. There is some pain in the lower back, legs, and some ankle areas, but this is minimal. In other words, she is normal.
I wish you have the same luck. We were very persuasive and knowledgeable, which certainly helped.

Paul