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

[marvass]

Paul, you did local radiation before starting IT herceptin, we did not. On small tumors it worked but not on the 2cm edema. Otherwise IT herceptin cleared over 10 tumors of 7mm or less.

Topotecan might have helped too, but I think that not doing radiation on the edema for such a lengthy period was a big mistake and Carol paid the price! But it looks as though the radiation now cleared the edema for we are at 1mg steroid only going to zero this week. Next follows an MRI and most probably we restart IT herceptin by end of next month.

Thanks for all your help and support Paul and wish you and Nina all the best.

Thank you Denise for you support.

Regards
Mario

[kaiulanis]

Hi,
I just joined and am fascinated. I have HER2+ leptomeningeal and probably brain mets, just discovered, very early. I've been able to put together Carol's story from Mario and have scattered useful tidbits from Paul but would love a nutshell diagnosis, treatment, result, prognosis timeline history of Nina. And Mario, Evlin, any details you can provide that would help persuade my doctor to try IT Herceptin? I sincerely hope everyone is continuing to enjoy relatively (it's all relative now isn't it?) good health. I don't have any edema and would like to go straight to IT Herc and skip WBRT but maybe you wouldn't agree? It's just that after being the hairless wonder, it came back curly, and I have this fabulous goofy hairdo that I'm loathe to lose. I hope you're still out there listening.

[Rolepaul]

kaiulanis,
This is a tough situation to be in. As Mario indicated, I think zapping the tumors locally and then introducing the Intrathecal Herceptin is probably the best method to do things. The results have been very promising so far.
I would have your doctor talk to Dr. Amal Melhem-Bertrandt at the Breast Cancer Center for MD Anderson Cancer Center in Houston Texas. There is ongoing work to show that IT Herceptin does remove the tumors in the brain and spine, but only when the Herceptin levels are higher than is being used for the Clinical Trial by Dr. Razier at Northwestern Hospital in Chicago (and Sloan Kettering in New York). I would ask for a Compassionate Use (or Compassionate Care) protocol to be started. This is done by having the doctor go to the Internal Review Board of the hospital. Once it passes there, the doctor goes to the drug company (Genentech/Roche in San Francisco) and they approve it, followed by the insurance company. Typically the IRB is the tough place, as Genentech and the insurance company will both approve this treatment. Start at 40 mg per week for four weeks, then go to 1.3 mg/kg of body weight. This will seem high, but clearing of the drug from the spinal fluid is very quick, with a half life of 36 hours or so. They can then follow the tumors being broken down in MRI scans every four weeks, follow the spinal fluid protein and glucose, and by the symptoms becoming less pronounced (walking, headaches, etc.). Let me know if I can do any more.
Paul

[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