Tag Archives: platelets

Did I Mention Your Results May Vary?

My white counts are not as such rock-star levels now that they stopped the white-count-boosting drug and started me on the suppress-your-immune-system-a-little-but-prevent-a-popular-kind-of-pneumonia antibiotic. They’re at a little over half normal levels, in fact.

But hey, my platelets are higher than they were since I was diagnosed with MDS (in fact, higher than they were several months before that). So I’m way less fragile that way! And I can hope that the platelet count indicates it’s donor marrow at work in there (since my own marrow had not exactly been shining in the platelet department). We’ll find out the results of that test Friday.

Goal: Not-I 95!

I’m happy to report that, at day 26 post-transplant, my white counts have really shot up–they were 2.73 yesterday, with the ‘phils 2.10! My platelets have started going up too, and reached 41 yesterday (a little over a quarter of the normal level). The red blood cells are the last to go into production after a transplant, and haven’t started going up yet–I got a transfusion of them yesterday to carry me over (after a couple days of being pretty wilted), and feel much better today. I will need to wear a mask outdoors and be very careful about infection for at least six months, as apparently the T cells (an important kind of white blood cell) take that long to come back, but it’s great to have way more immune system now than I did a couple weeks ago, and to know that there is very active marrow–hopefully my donor’s–doing its thing hidden away in my bones.

Speaking of which, this Friday they’ll take some blood to test how much of my blood is being made by my my donor’s marrow–the goal is for her marrow to be at least 95% of what’s in there, with no more than 5% from leftover marrow of my own. (This will facilitate the whole point of the transplant, which is to replace my old immune system with a new one that will, Lord willing, recognize and destroy the malignant cells I got diagnosed with last fall).

I asked all my friends and family to pray for “not-I 95” (except for my donor, whom I asked to pray for I-95). It will take a week for the test results to come back, so looks like it might be time for another test result wait hymn sing.

My small bit to fight individual obsessiveness/national medical costs

Although, as I’ve mentioned here and to anyone who’s asked me how I’m doing for the last five months (and a lot of people who haven’t), I’m pretty obsessed with my blood counts. So I am a bit proud of myself that today–when Dr. Virginia did not order counts for a routine checkup (because I had counts last week and will have more next week), but then said he could do counts if I really wanted to–I said no. It wouldn’t change my treatment any, and Dr. Virginia had just said he was fairly sure the Vidaza was working at least somewhat, so the mature thing was to not get more holes poked in my arms and more of society’s medical resources used up.

Of course, it’s a drop in the bucket compared to the necessary medical costs I’m incurring, but necessary things are what medical resources are there for.

It’s also a drop in the bucket compared to my general obsession with my blood counts, as witness my spending way too much time this evening making a scatter chart of them. These give my counts across the 28-day cycle as a percentage of day 1 of the cycle. For cycle 3 I had to extrapolate what day 1 was, as I only had days 5, 9, and 22.

cycle 3 = blue diamonds; cycle 4=red squares; cycle 5=green triangles. There was an extra month between cycles 3 and 4 (hence the stat for day 35).

See, the platelets have a nadir around day 16 or so, while the white counts have a nadir around day 28 (i.e., the time the next cycle starts, except in cycle 3, which had an extra week tacked onto it for Christmas). Cycle 4 (the red squares) is an outlier because that extra week let my counts come out of the Vidaza-side-effect slump. I’ve got my chart all set up to insert the data for cycle 6 and see where that goes…

How’d ya like those data?

I love data–it’s fun to hunt down patterns in them. (Yes, “data” is a plural noun–this notice brought to you by the Rear Guard Linguistic Change Resistance League). So, needless to say, I’m obsessed with my blood count spreadsheet:

Green vertical lines are the start of a Vidaza treatment–for me, that’s seven weekdays in a row, every 28 days.

The Vidaza affects my counts in two ways. One, it demethylates my DNA so my body better fights the malignant cells that were making my blood counts fall. (I’m still thinking of this as mentholating my DNA and making it minty fresh, but I’m going to look up the chemistry any day now). The biggest disease symptom I had was lowered platelets–you can see in the lower graph that they were falling steadily before my first Vidaza treatment (the first green line), and overall they are trending back up.

The second way Vidaza affects me is by suppressing my blood counts. This gives me a “nadir,” or low point, after each treatment–in the case of the platelets, you can see that the low point is maybe 2 or 3 weeks into the four-week cycle.

But in the case of white blood cells of various kinds, the top chart, the nadir seems to be about four weeks into my four-week cycle. Every month, the white counts finally start to climb up a bit during the first week of the Vidaza treatment, then head down again as the Vidaza shots continue and the side effect gears up again.

Over Christmas, I got an extra week between cycles 3 and 4, so I could go home and visit my family for the holiday. Right afterwards, my white counts shot up–all the way into the normal range, higher than they’d been since fall of 2011. So, the good news is, that means that the Vidaza is pretty clearly working! That’s the main thing.

As I started to head towards my regularly scheduled nadir, my white counts took a plunge again. To put things into perspective, my white count low point last week was about the same as my high point the month before, so that’s not bad. Here’s the question, though: will I get a big white count peak again next week, due to the Vidaza having kicked in? Or, was the big peak made possible partly or mostly because I’d got a week off?

My counts next week will tell which is stronger, countswise: the primary Vidaza effect or the side effect. Either way, I hope I get the transplant (I’ll find out more when I go see the expert on Monday). But it would be nice to have high counts and the ability to eat salad and so forth for a little bit before I go for the heavy duty stuff.

Another open note for Phil

More counts today–platelets went up some more, which I hope is a sign the Vidaza is working, but my white blood cells only went up a little, when I’d hoped the extra week off Vidaza for Christmas would let them reverse their downward trend over the last few months. And my neutrophils were just the same as two weeks ago. Phil, you don’t really mean to spurn me during the holiday season, do you? Let’s start the new year off right!

However, I’m grateful for a great Christmas back home with my family. As an extra bonus, no one had a sniffle, so I only had to wear a face mask in church (Christmas Eve service = crowded service).

Yay for platelets!

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So on Monday I saw Dr. Virginia, and he said it was “encouraging” that my platelets were continuing to increase (even on day 24 of my Vidaza cycle, a time when normally everything’s a little lower). Here is the chart that I had Excel make:

If you have MDS, I recommend making a spreadsheet of your blood counts to help see patterns–but also bearing in mind that there is apparently a lot of randomness in these things, so don’t assume that noise = signal (especially since decreased counts can be a side effect of Vidaza). So consult your doctor for help understanding your particular case. In my case, one of the clearest effects MDS was having on my counts was decreasing platelets–I didn’t start Vidaza until the start of October, and as you can see the platelets were dropping consistently before that. Now, they vary a bit during the Vidaza cycle, but are trending up. A hopeful though not definitive sign that this drug may be doing its job of getting me ready for transplant!

Dr. Virginia also said I could get on an airplane to go spend Christmas at my parents’ house with my sisters, so here I am. Yay!

My immune system is still super low, though (even more than before). Phil, come back–I know we can work this out…

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.