Pernicious - Oh, Dang!

In the midst of all the excitement with the Waldenström Macroglobulinemia, another problem that the hematologist noticed hasn't been addressed fully.  In addition to the unusual proteins in the blood that led to the Waldenström diagnosis, he noticed a vitamin B12 deficiency.  A couple weeks ago, at my weekly blood test, he ordered a test for intrinsic factor.  What's that, I wondered.  Off to Google I went, to learn about it.  It's a protein that needs to be present for proper absorption of the vitamin.  A lack of it, along with a B12 deficiency and low hemoglobin, indicates something called pernicious anemia.  Boy, that doesn't sound very pretty!  It's also characterized by a wide distribution of red blood cell sizes.  Oh dang - my blood test results show that RDW - Red blood cell Distribution Width - is high.  So my red blood counts are low (anemia); the cell sizes are widely distributed; and now we're testing for intrinsic factor.  I spent a week worrying about pernicious anemia.

The following week, when the test came back, the nurses said the test was negative.  "Is 'negative' a good thing, or a bad thing, in this case?" I asked.  They said it was a good thing.  Unfortunately, the hematologist wasn't available to discuss it that morning (last Monday), but I had an appointment to talk to him today.  "So, no pernicious anemia, eh?" I asked him.  He clarified: the test looks for an antibody that destroys intrinsic factor, and the negative result meant that the antibody is not present.  That doesn't mean I do have enough intrinsic factor and that I don't have pernicious anemia.  Oh dang, again.  He said that the next test would be endoscopy, where they stick fiber optics down your throat and look around inside your stomach.  Apparently there is pathology that can be observed to diagnose pernicious anemia.  That would be consistent with the RDW numbers, which I forgot to ask him about.  Meanwhile, he's not particularly worried, especially since I'm taking B supplements every day.  He said let's wait for the WM to settle down a bit, then do the endoscopy.

Two weeks in

I've been in the RAD001 trial for just over 2 weeks now (started Wednesday 6/3).  There have been no serious side effects, although I'm writing down every ache, pain, bruise, sniffle, and other potential symptom.  If any of them evolve into something more serious, I want to be able to say definitively when it started.  I did have a mild nose bleed that recurred every morning for about a week, but I had a blood test today (Friday 6/18) and discussed the platelet count with Dr. Treon.  Neither he nor the local hematologist could see anything in the blood count that would cause unusual bleeding.  There were no bloody clots in my nose this morning, so perhaps it's gone away, and I'm also not bruising or otherwise bleeding abnormally.

And the good news is that my anemia is improving!  At the start of the trial, the hematocrit number was 24.5.  It increased steadily in weekly blood tests, and is now at 29.8.  It's got a way to go, though; normal is 35 to 52.  There are other red blood cell numbers that (it seems to me) should be improving as well, but the improvement isn't quite as clear.  Dr. Treon tends to focus on the hematocrit.

But lest we get too optimistic, my white blood count has been going down.  Neither of the doctors is concerned, but we need to keep an eye on it.  At the start of the trial, the granulocyte count was 2.05 thousand/microliter; it has dropped to .9 (although it held steady at .9 all this week).  I'll have another complete blood count (CBC) test on Wednesday, to be on the safe side, and then it's up to Boston on Monday 6/28.