This all started last week when I got an unexpected call from Duke telling me they wanted me to come up on Tuesday and stay up until my Liver enzymes came down a bit. It was a bit of short notice, they called me up at noon and told us to be there that night! The room I stayed in was really nice and here’s a shot of me working away….it was really all I could do to stay sane
I think I was probably the only person on the floor who could actually walk without assistance, and after a couple days they actually had to ask if I was the patient or what was going on. The iv on my arm gave it away.
So we went in with my ALK Phos at 380 and came out with the ALK Phos at 280, which is still pretty high. They also ran some tests on my liver and determined that it was a bit fatty. They weren’t too concerned about that, they said it was probably just a side effect of the drug that I was on previously but are going to continue to keep an eye on it.
We finally got out of there on Friday and it was great to see little Caroline after spending her first nights with her friends. A special thanks goes out to Rachel, Cara, Jonathan, and Brody, who took her in on very short notice!
That brings us to today. After a slight mix up on the MRI on Friday…I had to do another MRI today….apparently the first test was incomplete, so we had to do it again today. Luckily I drank a lot of water over the weekend to flush the contrast out of my body.
So after the MRI we got my blood checked again, and my ALK Phos was still at around 220 which is way too high to get any more drugs today. When looking at the MRI, I have to admit it was a little scary. Your first impression is the tumor is pretty big…I guess because it is. When you look a little deeper at it, it does appear that the tumor is breaking up a bit more than in the past. So what does all this mean? For now, we are going to take a month off from all the trial drugs and try and get my steroids tapered down a bit. We are then going to go back up to Duke in a month for a MRI and hopefully that will give us a little better idea of what is going on. Here’s a picture of the MRI:
Yeah, I know that tumor area is pretty massive, but we are continuing to hope that it goes down over the next 30 days. My Dr. did point out that it goes against all her judgement to do nothing at this point, but it appears that is what has to be done. For this type of therapy to work, you have to give it some time to start taking effect, so that is what we are going to do next.
The good news is I continue to feel really good, so maybe that is a good sign!