Done

Before I get to the medical stuff, let me just say that Zach and his brother Jacob are having a great time in New York City! Among many other things, they rode bikes in Central Park and went to a Yankees game yesterday, and went to the "Bodies" Exhibition today. I'm so glad that Jacob is with him...it is his first trip to the city and it's so good for Zach not to have to be alone again.

So...medical stuff...
As you know, this trial has been extremely hard on Zach. The physical side-effects, though they are better than they were at the beginning, are still more than we bargained for. On top of that, the frequent travel is taking a toll on Zach (and our wallets) and there is just something inside of him that doesn't feel "right" with this drug, not just physically but emotionally as well. The plan of action was to give it one more cycle and get scanned again in 3 weeks to see what it was doing. However, even though his last set of scans (that he had at the beginning of June) showed some improvement, he has started to have some pretty significant lymphoma symptoms in the past couple of weeks. Cough, wheeze, chest pain, tremors, etc... He really just has a "feeling" that things are progressing again. And, he's been through this long enough to just "know".

On his way to Columbia today, I had an email correspondence with the coordinator of the SGN-35 trial at MD Anderson. She told us that they were looking at the beginning of August as a target date for him to get back on this treatment. As you remember this was the treatment that got him into remission in 6 weeks with virtually no side-effects. Before he begins any new trial, there is a mandatory 4 week period right beforehand that he cannot have any treatment of any kind. So, Zach made the decision today to end the Belinostat trial and try to take a break for the next month before heading to Houston to start the SGN-35 trial.

Was this the right decision? I don't know.

There are pros and cons. Pros - no more travel to New York for a while, no more choking down the pills and waiting for the side-effects to rear their ugly heads, and hopefully an improvement in his emotional well-being. Cons - there is still disease and it will progress over the next month,  he will probably be excluded from many other future trials of this type of drug (HDAC inhibitor), and we don't have a firm start date for the SGN-35 trial, just the "beginning of August", and if you know clinical trials, you just never know what can happen.

But, this felt like the right decision for him to make. He feels like a tremendous weight has been lifted from his shoulders and that is a big deal. Throughout all this we have learned the importance of quality of life...and this just wasn't giving it to him. All we can do now is hope that things don't get too aggressive in the meantime and keep our fingers crossed that things will work out for him to get SGN-35 in a month's time. And, if the disease gets really bad, Dr. O'Connor and Dr. Zain at Columbia will talk to Dr. Rosenfeld here in Fayetteville and prescribe a recommended treatment plan to get him on chemo right away. He hasn't had chemo in over a year so we would think it would be bound to work again, at least to keep things in check for a while. There are other trials going on as well and Columbia and MD Anderson both have other options for him, if need be.

This is hard. These decisions are hard. None of this is ideal. But right now, even though he has symptoms, he still generally feels pretty good. (He was able to ride a bike for 2 hours in Central Park yesterday!) We're hoping to have a great holiday weekend, a wonderful July, and then we will see where the road leads. And hopefully it will lead to Houston sooner rather than later....

Thank you to everyone for everything and happy holidays!