The good news is that Beth’s white blood cell count is up above 3.8 — given how it had dropped over time with the Vidaza treatments, this makes it seem as if it’s rocketing up. Her white counts haven’t been at this level since back in August. Her hemoglobin level was up to 10.4 — I think that may still be up from her transfusions the other day, but I’m not sure of that.
The bad news — and I admit, this is the non-glam part of the whole deal — the mucositis / mouth sores are just not very pleasant at all. She’s being treated with Acyclovir, which “is used to decrease pain and speed the healing of sores or blisters”; she’s also being treated with regular use of a couple of different mouth rinses that help to function kind of like salve on a burn.
Later, we’ll be going on a walk around the floor. She’s at the point now where getting up and about will help speed the healing process.
Bethany gets her blood tested at least twice a week, and yesterday she had another blood test. The doctor from the Lab called to tell us that the lab tests she had yesterday were more stable than the tests she had done in the hospital.
I don’t have access to yesterday’s numbers, but the last four columns in the chart below were all taken during her hospital stay last week. (Click on the chart for a bigger view, and click your “back” button to return to this article.)
The numbers in red represent “critical lows”. She’s down there in all three counts: hemoglobin, white blood cells, and platelets. It’s good that she’s “stabilized” from this. There’s another good thing: Her LDH level is down to 340. As recently as September, her LDH level was 621. As one nurse told us, “That’s the disease process”.
We had a bit of a rough day yesterday. In the morning, we took a drive down to the VA hospital. Even though Beth is being treated through private medical insurance through my company, she needs to “get into the VA system”. We’ve already applied for, and she has been approved, to receive at least some medical coverage.
But the thing we are really looking for – “disability” benefits, are going to take a whole separate process. Which involves Beth actually making an appointment with a primary care physician within the VA system. All I’ll say at this point is that we got that process started.
Then we had an appointment with Dr. Jalil, in association with another round of Vidaza. This is the fifth round of Vidaza, and, while Beth’s disease is controlled and her level of “blasts” down to 5%, we haven’t seen that corresponding elevation of some of her other blood levels.
And so, two weeks ago, Beth needed yet another transfusion; we got a call last week, her white blood cells were at a “critical low” level (at 1.9); platelets were bumping along below 100. Her lymphocyte% and monocyte% are also high.
For the last two cycles, too, Beth has been receiving Vidaza injections instead of intravenously. That’s rough at the point of injection the area becomes bruised, then it swells and the skin peels (like a sunburn). It’s supposed to take less time than the IV, which takes about an hour. Still, because of various inefficiencies, we ended up having to spend about three hours at the doctor’s office yesterday.
Our son Zach brought something home the other day that involved having the body aches and a slight fever. After Beth’s recent blood test, they called us to let her know that her white blood cell count was down to 1.7 – that’s the lowest I’ve seen it.
White blood cells are the ones that help you fight infections, and so, now Beth has got the body aches and feels a cold coming on. This week, too, is going to be another Vidaza week. With the news of the donor, Beth has generally been in good spirits, and with the blood transfusion about a week ago, she’s been feeling pretty good as well. So with all of this going on, it’s likely she won’t be feeling so well this week.
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.
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.