Liza Yore's Journal
Written Dec 15, 2012 1:46pm by Liam YoreWe met with the oncologist yesterday evening. It was a long talk - about 90 minutes. In short, we will be going on Xeloda and Lapatanib. These are both oral chemo (pills - no port or infusions needed) which is nice. Lapatanib is a molecule that specifically blocks the HER-2 signal on the inside of the cell, and is pretty well tolerated with few side effects. Xeloda is a DNA synthesis inhibitor, which helps kill rapidly dividing cells. It has moderate side effects, mostly some nausea, vomiting and diarrhea and something called "Hand-foot" syndrome, in which the palms & soles can get inflamed and painful. Her hair may thin but will not fall out. It can be rough sometimes, but not nearly as bad as the IV stuff we had the first go-round. She will take the Lapatanib every day (with food) and the Xeloda two weeks of every three (without food). We will continue this regimen indefinitely, either until there is evidence of treatment failure or if the side effects are too severe to bear. Our oncologist said she has seen people take these meds for "years" and do well on them.If or when we have to stop this regimen, there are still other options. There is a new antibody-based drug called Perjeta which is quite efective (though less so for brain mets, whereas the Lapatanib hits the brain mets well) and there is another med called TDM-1 which is in Phase III trials. It's basically Herceptin, an anti-HER-2 antibody, with a chemo agent linked to it: sort of a "magic bullet" approach to therapy. We might be able to get it on a trial, on compassionate-use basis, or it may even be FDA approved shortly.So we have a lot of options. We will get started this week, as soon as the pharmacy gets us the meds. I asked the oncologist to re-present our case to the docs downtown at the Seattle Cancer Care Alliance, to see if they have other recommendations, but I doubt they will. The treatment we are going on, based on my reading of the current literature and conversations with some oncology friends, seems to be very much the mainstream for our situation. The trials that are ongoing are either not quite appropriate for our situation or not exceptionally promising; we may pursue that approach later, if needed. I wish we were more excited about getting on the treatment, but it feels like deja vu all over again, getting back on that treadmill that we never wanted to be on in the first place, and this time we know we will never get off of it.Lest this sound like too much of a downer, I offer this important bit of perspective, written by one of my favorite science authors, Stephen Jay Gould, when he was diagnosed with an "incurable" cancer: The median isn't the message. It's well worth the read. He lived another 20 years and died from an unrelated illness. That's the goal we are aiming for, and Liza is very determined to get there.Thanks again for reading.
Gamma Knife day
Written Dec 13, 2012 2:14pm by Liam YoreToday was the big day for the brain mets!We got up at 0400 for the procedure. The boys had been overnight with some friends and another saintly friend came over at 0445 to tend to the girls. We had check in at Swedish Cherry Hill at 0600, and after some preliminaries we saw the neurosurgeon and Liza had the frame "applied."And by "applied" I mean "bolted onto her skull." See pictures here.They gave her LOTS of numbing medication and also some ativan beforehand. Despite the medieval appearance of the device, Liza reported that she didn't feel much discomfort and almost no pain per se. Take into consideration that she has an incredibly high pain tolerance, though. I am quite sure I would have been whimpering and begging for morphine. Immediately after application of the frame, she went off for a quick non-contrast CT of the head. Another bonus for the day was that she didn't need an IV, which is nice since she is getting pretty sick of being poked.After a while the radiation oncologist came in and gave us the results of the biopsy. It is officially recurrent breast cancer, which was not a surprise, and best of all it is still HER-2 positive!!! This means that we will have some much better treatment options and likely a much more favorable prognosis. While not curable, it is possible for this to be a chronically manageable disease.Then we had a long down time while the physicists did the planning and the computer magic. Finally they took her to the procedure room. The machine looks like a big CT scanner only the open hole in the center had a pair of ominously closed doors. Liza lay down on the table and the head frame bolted very securely onto a neck rack. They did not want her moving! They were very careful making sure that she was in a comfortable position and in fact Liza later said it was less uncomfortable than the MRI yesterday. Then we evacuated the room and watched on video monitor as the doors slip open and Liza's head was put in the box.She had an hour (63 minutes) on the table, which is a bit less than average, I am told. She said it was quiet and they played her some music. When done, they took her back and took off the frame. She has 4 holes in her forehead/scalp, but doesn't have any bleeding and it will heal up. They gave her some medicine to prevent nausea and we were free to go. All in all, the whole thing took about six hours, somewhat less than we had been expecting.We will have a follow-up MRI in 2 months. The Rad Onc cautioned us that they do expect to see some new spots on that study, since Liza has not yet started chemo, but that is OK. We will zap those when and if they show up, and once the chemo controls the systemic disease, the rate at which new brain mets develops should drop off or hopefully even stop. She will get screening MRIs every three months for the rest of her life.So now she is resting. She is very tired (as am I) and a little nauseated with only a mild headache. We meet with the oncologist tomorrow to find out exactly what form the treatment will take.Thanks again for reading and great thanks to all our friends and neighbors who have helped out, volunteered, brought food or sent flowers or just sent well-wishes.
Gamma knife prep MRI
Written Dec 12, 2012 10:44pm by Liam YoreLong day today. Liza had a special planning MRI at Swedish downtown. It required her head to be strapped to a hard board for about an hour, and they did way more imaging than for a normal MRI. At one point she was told "Now this is the one that we'll be using to aim the gamma knife tomorrow, so don't cough, swallow or move your eyes."No pressure.We were only down there for a few hours, but it was a major undertaking since we had to coordinate all 4 kids getting picked up from school and taken overnight since we need to be back at Swedish at 0600 for the gamma knife. Tomorrow will be a very long day; I'm not sure how long we will be there, but we were told it would be "most" of the day.So Liza is pretty tired, mostly of all the testing and needle sticks and weird injections. It has her pretty low right now. Feel free to send her an email to cheer her up!Wish us well tomorrow: they will be using focused radiation to burn the cancer out of her head, which is pretty badass when you think about it.