2-4-10 Los Angeles, CA Airport LAX
We met with Dr Antoni Ribas (originally from Spain) today at 100 Medical Plaza at the UCLA hospital area. He explained the need for a good tissue sample to confirm Liz has the Braf indicator on the genes. Tissue sent from Huntsman was not frozen so it wasn't useable when it arrived. Grr. They will need to send more from the same biopsy if they have enough and it isn't stained, OR we will need another sample. Hopefully there is enough tissue at Huntsman to send immediately to begin testing, which takes 3-5 business days. Once she is proven to have the Braf indicator she is officially in the study.
The next step is to have 5 ECGs done in an 8 hour period, every 2 hours. Then they can begin treatment. She can do ECG then day 1 of the first cycle the next day, so it will be a 2 day trip next time. After that it will be every 22 days she will return for blood samples, ECGs and there will be other tests/scans as needed. We need to get her started within a 28 day window from her last scan on 1/27 or else she will need a new scan.
The treatment works like this: Genes in the cells tell cells to grow and reproduce, then normally they also tell them when to stop. Braf is one of the mutations in cells which turns on growth of cells but doesn't turn it off when finished as normal. (Others are Ckit and Nras) IN young melanoma patients, 80-90% have the Braf indicator. This drug targets or blocks the Braf mutation. It is 80% effective. Eventually the cancer finds another way around the blocker. While it works it reduces pain and the size of the tumors. She can keep taking the medication as long as she wants or as long as it is working. There is a person who has taken it for 14 months now.
We are very encouraged that she will be able to do this study. We feel very blessed for Brad's work at researching alternatives, and for Dr Samlowski helping to get Liz considered quickly as well.
Another good note: JD was hired by Varian as a glass assembler, making them for X-ray tubes. This will mean a raise in pay, and hopefully good insurance fairly quickly as well. We are excited that Brad could find him a new job.
We are also so grateful to Val, Brent and Stillman for welcoming us into their home and beds for the time we were here. It looks like we'll be returning regularly. It has been lovely to get a little warm weather break, even if just for a day. (60 degrees is warmer than Feb in Utah!) Brad did the driving and his iphone helped very much with maps and directions. J
Love, Tracy
PS – we came home to a different house! Some loving angels came and cleaned our messy kitchen and dining room. THANKS!!!
