As you know, I missed my labs yesterday by 2.5 pts. I went in this morning at 8:00am to be retested. The thought was that they would go down over the last twenty-four hours, and I would be good to get into the Ibrutinib study.
They did go down. They dropped from 110 to 10. Right in the dead center of normal. The nurses and doctor were elated, but I had a bad feeling about it. They had been dropping pretty steadily by about 10 points per day since the Monday before last. Did they REALLY suddenly drop by a full 100 pts overnight. I asked to be retested.
They thought about it and went ahead. Turns out the sample had been contaminated. My new liver enzyme number for the day is 106. TECHNICALLY it is good enough to get into the study, which says that particular number needs to be 107.5 or less. But the sensitivity of the test is about +/- 2 pts. Also, it does not matter what the test at Waldo says, that is just a pre-test to make sure that I am within study parameters. The test that matters is the blood that is sent out to the independent testing lab. I have NO idea if they are also going to find that I am just 1.5 points below what I need, or whether, because of slightly different testing methods, they will find that I do not yet fit into the study.
No clear resolution. Be that as it may, as far as planning, we are assuming that they will except it. So around noonish, I will be headed out to Burlington. One of the study coordinators from Fletcher-Allen will be hounding the independent lab all morning to try to get the information on whether I am in or not, and will let me know as soon as the results become available. Hopefully it will all work out, but there is still a chance that I will get a phone-call on the road letting me know that I might as well turn around.
Sigh. I am going to take an extra Lorazepam tonight to ease some of the anxiety. 96 would have been a great number. 106 - argh! I don't even know if it makes sense to continue on a couple more days and assume that my numbers will be correct by tomorrow or Friday. Or whether it is time to start something else. My doctors and I are all on the edge of our seats hoping that it works out.
Leif
I am guessing 98 - if I'm right, I get Nutella, right? Let us know as soon as you know. Here are some good enzyme vibes ~~~~~~~~~~
ReplyDelete-Karen
To make a go/no-go decision on the basis of a single number with that degree of uncertainty is beaurocratic insanity. Keep pressing and don't take no for an answer!
ReplyDeleteGood luck.
Keith
Oh, what a crazy roller coaster! And not a fun one at all! I'm pulling for you, Leif!
ReplyDeleteTried to set my computer up so it would let me know when you posted something--but it didn't work--rats--so I'm just now catching up on your last couple of posts--hope testing has gone well since your post yesterday. Love ya!
ReplyDeleteKeith, total agree. And then they went no-go on a potential number, that they assured me would not be an issue if I got to this stage. I feel this could have been handled a little better by Dr. Sprague. I really advocated pretty hard, and think that if I could have met face-to-face, we could have reached an understanding that would allow me into the study, but unfortunately, I was not even able to bring about that meeting. There is only so much that you can do over the telephone with someone that you don't know very well.
ReplyDelete