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.
I’m not sure where the majority of our bone marrow resides – in our hips, thighs, ribs? But Beth has definitely got the body aches in her mid-section today. Having a wife who has leukemia is easy some days, when she’s happy and carefree, knowing her blasts are down to 5%, she’s joyful from her relationship to Christ, when she’s playing or coloring with the kids, and yes, especially when we’re sharing close, private time together. It’s a mite harder when she’s curled up in a ball on the bed with the “deep down body aches”. I suspect that has something to do with some damage that’s been done to her bone marrow (she’s down to 20%), but that’s just a guess on my part.
For those of you who have been following my theological writings, I’ve put up two more posts this morning:
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.
The Doctor’s report yesterday was fairly decent. The disease has been “controlled” by the medication she is taking. That’s the biggest thing. The real danger back in June was that she would progress from where she was (“15% blasts in marrow”) to aggressive “acute myelogenous leukemia” (AML, marked by 20% blasts in the marrow). After her biopsy last week, we found out her blasts level was back down to 4% (and all healthy people have 5%).
There are still anomalies in her blood. Overall, her blood levels are very low (though rising), and a certain kind of white blood cells called “monocytes” are doing some crazy things. The marrow report said “in summary, there is an absolute monocytosis consistent with a myeloproliferative disorder.”
The particular brand of leukemia that Beth has, “chronic myelomonocytic leukemia” (CMML) is marked by both “myelodysplastic” and “myeloproliferative” characteristics. And as I’ve written in the recent past, when the disease is marked by a change from “myelodysplastic” to “myeloproliferative”, at least one study I’ve seen has suggested that this is a not-good progression in the disease.
(Our doctor is not one among those who sees this as a progression — he prefers to look at the actual numbers, and to say, “they are still in the good range”. And I am certainly in a position that I need to trust his understanding of things more than my own.)
The bottom line is that, while all of these movements are traceable and discussion-worthy, the only important thing is that Beth be in “the best condition possible” for the bone marrow transplant, which likely will happen in 6-8 weeks. Again, some think the dysplastic–>proliferative switch is a progression that can hurt her chances in the transplant; but our doctor does not.
On that front, we do not yet have a donor, although there are a half-dozen individuals who match on 10 out of 10 specific DNA markers. These folks are going through additional testing. The reason we only have six is because Beth has an unusual combination on a couple of the more important DNA markers. And among these six, none are “ideal” – in the sense that there is an “ideal” profile of a healthy young male, no tattoos or piercings, who has not had any major diseases in his life.
These folks are older, some of them are older females who have had multiple pregnancies (and the related antigens that can cause some issues).
Our doctor says that we will move ahead with the transplant just as soon as one of these donors is selected. And I’m hoping to place a call today to the “transplant coordinator” at the hospital who is actively working on this to find out what’s happening.
We learned a few things in our appointment with Dr. Jalil yesterday, though I’m not certain I understand it all. Dr. Jalil’s is where Bethany has been getting her Vidaza treatments. He had received a copy of Bethany’s bone marrow biopsy results, but he hadn’t had a chance to read them closely yet.
We did learn a few things. Large, trendy things, I guess you could say.
First is that the treatment seems to be working effectively. “As expected”. That is, while we have been watching Bethany’s blood levels go up and down, the general trend is that almost everything is going down.
Early bone marrow biopsies showed her being “hypercellular” – that is, her bone marrow was marked by extra tissue, and even some scar tissue. Now she is at about a 20% level of bone marrow. That is, yes, very low. Explanation: “the medication is controlling the disease”. (Blasts and monocytes, in aggressive leukemia, would tend to build up. That Bethany’s is so well cleared out is seen to be a good thing.)
For example, in an early biopsy, her blast counts were 10-15%; now they are 4%. Normal folks are at 5% blasts in their bone marrow (blasts are “baby blood cells” that grow up and differentiate. In aggressive leukemia, the blast number tends to exceed 20% to 30%, and they really “gum up the works”. So this level is good).
Beth’s monocytes are still hovering around the 10% level. That they have not gone higher is a positive thing. (They could have moved from 10% to 20%, but they didn’t.)
In short, the treatment kills both bad cells and good cells. And we have seen some good cell production in this.
Finally, I saw something I had noted in all of my poking around to learn things about CMML. I emailed Dr. Rossetti about it:
I believe I saw that Beth’s condition, once “dysplastic”, now more exhibited the “myeloproliferative” characteristics. Without knowing exactly what that means, I want to point you to this recent study (again, with the low number of patients from CMML), in a school of thought that may or may not be well accepted, that the shift from myelodysplastic to myeloproliferative properties is really a progression of the disease.
I realize that we are dealing with some pretty nasty stuff — it’s not quite AML, and the low numbers of blasts and other numbers are good. But I hope you can put this into context for us.
And he responded:
The two variants remain largely distinguished by the height of the white count. Beth’s white count is well controlled and her marrow is actually exhibiting lower cellularity than before. Thus, on a clinical basis, I do not think she is transforming.
While there are emerging data suggesting a continuum, this does not seem to be universal. At her young age, I would be inclined to the same treatment either way: first an MTI [methyltransferase inhibitor – Vidaza], then transplant. If at anytime we see evidence of progression, we may consider chemo. At present, I like where we are headed.
The good thing, then: there is no “progression”. Dr. Jalil summed it up: “We want to see the least number of bad cells.” That, he suggested, was the definition of healthy marrow. Even if it’s only at a 20% level.