Wednesday, February 2, 2011

Back from China


We got back from an amazing exhausting and bitterly cold trip to China, spent one day at home getting IVIg and then flew to San Francisco for 4 days of meetings and a chance to visit my daughter and son-in-law.

I am still recovering.

More on China later and my family later, but first let me share that my latest lab shows my anemia is getting worse and for the first time I have some very mild liver inflammation.

It is premature to see this as a true trend, but not that premature. Next week's studies should provide the information as to whether these are just a meaningless fluctuations that might be explained by my radical change in diet (my dad's comment to me on my return was: Had enough Chinese food for the rest of your life?) and the considerable stress of travel, or are they the harbingers of real change.

If the liver tests get worse, then I will probable restrict my diet more, and add milk thistle. An ultrasound and some lab may be needed. Hard to figure the cause. Medications seem like the most likely culprit.

If my anemia is confirmed, then I will need to look for causes: AIHA? meds? extensive CLL invasion of the marrow? or the dreaded MDS (myelodysplastic syndrome) that I recently lectured on. That would be ironic. I doubt it is nutritional.

My anemia is macrocytic, which means my red calls are too big. The common causes such as low B12 or folate, thyroid disease and alcohol abuse don't fit for me, so early MDS or meds seems most likely. My peripheral blood counts show no increase in my lymphocytes, so I doubt my CLL is going crazy in the marrow. And my platelets are great. Besides, my last BMB was pretty stable with very low levels of disease. And there was no evidence of MDS, but it can be hard to detect even if you are looking for it, which we weren't. Autoimmune hemolytic anemia is not usually macrocytic, but is easy to test for. A repeat bone marrow biopsy will be needed to check for MDS or crowding out of the good cells by CLL and I have one scheduled for April already.

Not wanting to borrow trouble, I will wait until next week before getting too worried about all this stuff.

My bet? The next blood draw is not definitive, suggesting that I am not falling off a cliff nor am I clearly on stable ground.

Such is the world of CLL.

In the meantime, I will get some much needed rest. Still so jet lagged. Or, I must admit, I worry that it might be the anemia.



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