So I'm going into the hospital at 1 PM, to get my PICC line, learn how to use it, and have a CT scan. No food after 12 today.
Right now I'm waiting around for Dr. A to call. I'm still wondering about the precision of this diagnosis. I thought the CT scan would be part of the diagnosis, but I emailed Dr. F and she said no, it would only give them a baseline with which to follow the progress of the disease. I want to know that they're treating me for the right disease, since this one's features overlap with other B-cell lymphomas. (I hope they are right, since the prognosis for any other lymphoma is worse.)
Sounds like there is a near-100 percent accurate gene expression profiling test for HCL (Lancet 363, 2004, 1869-1871): the annexin-1 (ANXA1) marker. So I'm going to be sure Dr. A knows about this, and also ask him about the CT scan again. If they don't find any spleen enlargement, at this stage in my own knowledge that would raise a big red flag.
Here's a picture. If you read the caption you'll see why you need an expert to understand all this.
No comments:
Post a Comment