Not only is it official, but he's started! Jared had another MRI on Wed, and we met with the doctor right after. He said that after the appointment he would fax all the info to Texas to get the final okay to be a part of the trial. At that point they were pretty sure that he would qualify to be part of the trial, but because it's only in Phase II, they have to have a control group (the group that gets the standard treatment) and a test group (the group that gets the new drug) to be able to compare the results. On Wed we were told that the first 20 people on the trial were given a 50/50 chance of getting the new drug, and after that it would be a randomized selection. Jared was number 24. So we were worried he wouldn't be selected to get the new drug. Well, we received word yesterday that he did! And he started treatment today!!
To explain the trial a little better, it's being conducted by MD Anderson Cancer Center in Texas, and there are only four locations in the U.S. that are doing it. And Jared's doctor is the one overseeing it at Huntsman. So we feel very fortunate that it basically fell in our laps! The treatment is this: Avastin plus the new drug Vorinistat. Avastin is a drug that is commonly used in Glioblastoma. They don't use it until after they've already tried chemo/radiation because it's a "short-term fix." It constricts blood vessels, preventing or slowing tumor growth, but it doesn't do much to control the active tumor cells, so those eventually take over. But with the trial, they are adding vorinistat, a drug that has proven to control cancer cell activity in other cancers. So in theory, the two together could be effective. We knew we had a MUCH better chance at longer survival with the new trial. So he goes to get Avastin through an IV every 14 days, and the days he gets the infusion he starts taking Vorinistat pills for 6 days.
As a side note, my mom has a friend who was diagnosed with a terminal cancer, in fact hers was spreading so rapidly that doctors only gave her 3 months to live. She did a clinical trial, was one of two in the whole group that responded to the trial, and she's still around 10 yrs later. So whether this is a "cure" or not, we just need him to be the ONE that responds!!
The P.A. asked us the other day at the appointment how our kids are doing, and if we've discussed the "situation" with them. The truth is, we don't see the point right now. The older two know that the cancer is back. But I don't think they need to know more than that right now. If Jared doesn't respond to the new treatment, THEN we'll probably sit down and discuss the situation with them. Jace has been acting up lately, and I wonder if he's stressed.
Now to try to summarize the past month, Jared has been doing okay, not great. His speech is a little better, but still really frustrating. It's been a hard month because we know the swelling in his brain is still horrible, and that it won't get better until the Avastin kicks in! And we also knew we had to wait four weeks recovery time to start the Avastin! Cosmetically, his head looks GREAT! He doesn't have the big dip he had before and the scar is healing up the best this time. But there are some new issues. The one that worries me the most is that he keeps having these weird lapses where I can tell something is wrong and I'll ask him questions and he just looks at me with a glazed look, so I don't know if he's about to fall or black out or start seizing. They only last a few seconds - the only way to describe it is that it seems like his brain just turns off. He did actually black out for the first time about a week ago. We're lucky that he didn't fall hard. I heard the thump, but when I found him he was on the floor crouched over and didn't fall very hard. He also gets really dizzy, especially when he stands up after sitting for a long time. I keep telling him to take his time, that we can all wait as long as he needs, but he always gets impatient and starts walking, which usually results in a near-disaster. So my stress level has risen dramatically. I've been seriously considering going on Zoloft the past couple months to calm my anxiety, at least until things start to settle down. I feel like an absolute stress-case! We think the "brain turning off" episodes are little seizures. He's been trying to get off topamax, of course, so that's probably part of the issue. The doctor is going to put him on a different anti-seizure drug to see if he likes it better. The doctor thinks it's probably due to swelling as well. So we are excited to have the treatments starting! Just one step closer to our lives becoming more normal...
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| Getting the Avastin infusion |
