My trip to National Institutes of Health

We drove down on Tuesday and drove back again last night (Thursday); the appointment was on Wednesday. They've taken me off the chemotherapy that I was on because it isn't effectual on the mets in my brain. They're looking at switching me over to a new, more targeted chemotherapy. They're going to try to obtain some more tissue samples so they can do some genetic sequencing to see if my tumor has any genetic markers that respond to certain therapies. And in the event that they don't find any, or it's taking too long, they're going to put me on one medication that is targeted toward something for which I already tested positive - it's a receptor called "HER2" which responds to herceptin and lapatanib. Also, a broad spectrum cytotoxic agent (more traditional chemotherapy)... Dr. Fine suggested "Taxol" or something in that family, based on Fine's instinct.

Anyway, Dr. Fine (head of neurooncology at NIH) told me that the sizes and locations of the brain mets are not likely to be causing me any kind of neurological effects. He thinks my balance issues are due to the weakness in my legs caused by the steroids. He doesn't think I have any neurological symptoms right now from the brain mets. Also, apparently the voice issues (I've been vocally impaired for about six months now) are very common with the use of Avastin, so if I discontinue that I may get my voice back. So right now we're going to wait on them to get the tissue samples sent to NIH and do the sequencing and see if there are any targeted agents they can use, and I'm going to start weaning down my dose of steroids very slowly. If it takes too long, they will probably start me on the above-mentioned combination of herceptin/lapatanib and taxol or something similar.

So that's what we found out at NIH. Radiation is back on the table as a possibility for the future if the brain mets get to be a problem. I feel a lot better knowing that there are options - not just options for treating the cancer but options for treating the side effects of the cancer treatment, too. I'm frustrated with being so weak and not having a voice.