Beth has been admitted to the hospital, probably just for an overnight stay, but she’s got some things going on and they probably want to observe her.
Most annoying are the skin lesions, “abscesses” she’s got in her face and a couple of other areas of her body. These are, just as the definition says, “a collection of pus (dead neutrophils) that has accumulated in a cavity formed by the tissue in which the pus resides due to an infectious process…”. Her white blood cell count (and neutrophils are among these) is very low, they want to give her some intravenous antibiotics for them.
Otherwise, she’s in day six of a seven-day cycle of Vidaza, and her red blood cell count is down to 6.2 (the magic number is 8.5), so she’s going to need a couple of transfusions.
Zach took her down to the hospital this morning and has been with her all day. I’ve just gotten home, made sure the kids had something to eat, and now I’m headed down to the hospital.
The good news is that, once we have the transplant, this whole set of problems changes into something else…
The latest blood chart. Note the low figures due to the Vidaza
At least what we’re seeing here is nothing out of the ordinary: during a Vidaza cycle, all of Beth’s blood levels get eaten up. Note that her White Blood Cells level on 9/26 is listed as a “critical result” – and the platelets are not far behind, I’m sure.
The good news is that her “blasts” level has been at 0% for a while. That’s fantastic. Also, her neutrophils are back up, and in conjunction with some things called “Bands” (which I have not been showing all along), things could be better but they are still ok.
I wrote to Dr. Rossetti: “Beth has been feeling some of the symptoms of low hemoglobin – tired, body aches, light headed. We thought this might be some of the effects of the Vidaza, (she had her last injections yesterday), but maybe not. All in all, she had a pretty good weekend, despite that she was in the middle of a Vidaza cycle. But we can tell when she’s getting ‘low’ because it’s a big effort for her just to get through taking a shower in the morning.”
He noted that “these types of disorders can be exceedingly difficult to cope with…especially in younger patients”. He also reminded me of both “the magnitude of the disease” and also “the curative goal of transplant.”
That is, she’s going to feel crappy. She’s got leukemia which is eating up her blood. But on the positive side, there is great hope that she can be cured of all this. We just need to sit tight.
Beth got a call from Dr. Rossetti’s office again yesterday; her hemoglobin had dropped to 8.2, and so that means another transfusion. There seems to be some rhyme and reason to the way this is going. Cycles of Vidaza are indicated by the arrows above the chart.
Hemoglobin: At present, nothing seems to help this except for transfusions. However, these take about 100 days to manufacture, and we are hopeful to see some improvement now, after three cycles of Vidaza.
White Blood Cells: Vidaza seems to whack them, but they recover quickly.
Platelets: Vidaza seems to have a bit of a harsh effect here, too, although most recently, her platelet count has been falling anyway.
Neutrophils: These are very good white blood cells – first responders to bacterial infections – and these are well into the normal range, after having been far off at one time.
Monocytes: Again, Beth has “chronic myelomonocitic leukemia” (CMML), and so getting these into the normal range appears to be a good thing.
Please note that none of the above is a genuine medical opinion, just the musings of someone who has an interest in figuring out what these numbers mean.
Click on the chart to view a larger version. The last column is mostly blank because I don’t get all of these numbers right away. But Beth did get a blood sample on Monday and we do know that she needs this transfusion.
One of the more vexing issues for us has been the notion (a) that Beth’s levels needed to be under control before the transplant to maximize her chances for success, and (b) the key number that we were watching, the hemoglobin level, was continuing to go down through these treatments.
Yesterday’s intake meeting was an important milestone for us, not least because I accidentally stumbled upon a chart that contained all of Beth’s blood numbers, not just one day at a time, but in chart form. Dr. Jalil had one of these charts for roughly the period in July and early August, and Dr. Rossetti graciously had one printed for me with the most current numbers.
A more complete blood chart, as of 8/23/2011
These charts had some numbers that I had simply not seen before, because I was asking the various office staffs to send the individual blood numbers, and I wasn’t always receiving them.
I’ve updated and reproduced the chart here, using some of the missing numbers and there are some really important things to note. First, look at the Blasts level. In July, they went way up, after the first cycle of Vidaza. We hadn’t seen this. And after the second cycle of Vidaza they went down to zero. That’s a critical level, because these are the cancer cells. Note also, the Blasts level went up a bit later in August as well. But after this cycle of Vidaza, I think we can expect to see some more zeroes.
Note too, the Hemoglobin levels went up just a bit between August 11 and August 15. That small rise was attributable not to a transfusion, but just to her own system raising her hemoglobin level. In fact, she may not have required a transfusion after August 11 (on August 18), given that level of 8.7 on August 15, but she got one anyway.
Her White Blood Cells, Platelets, and Neutrophils (especially these) are seeming to moderate, closer to the normal range over time. This is exclusively a function of the Vidaza.
So while we had been looking at just one number, Hemoglobin, and not seeing much progress there, the doctors had been looking at some of the other numbers, and that whole picture was a much more hopeful one.
