Tag Archives: vidaza

Compelling Explanations

So, it turns out Phil does not like being in this study. As you can see, my neutrophils decided to take a nosedive shortly after I started the Vidaza on 7/8. (This is for the study I got into, to tweak the post-transplant treatment of people with successful bone marrow transplants in order to try to reduce the risk of recurrence.) Less Phil is a pain in the tush, as it means more mask-wearing, obsessive hand-washing, and general persnicketiness–possibly for the whole year I’m in the study. The study also includes me giving myself shots of white blood cell boosting medicine (Sargramostim), but apparently Vidaza’s ‘phil-busting side effects trump Sargramostim’s ‘phil-boosting. Darn you, Sargramostim! Stand up and fight! Do it for Phil.

Phil does not like being in the study.

A bigger question, which I asked my doctor last week, was why a regimen that depresses my white cell count is boosting my immune response to any cancer cells that may still be lurking in my bone marrow.

As I expected, my doc at Hopkins had a compelling explanation. While my phils, which help fight bacteria and viruses, are taking a temporary pounding from the Vidaza, my lymphocytes, which are instrumental in going after cancer, are relatively unaffected. Meanwhile, the Vidaza turns on DNA in cancer cells which helps them to go ahead and DIE, already.

So, it’s clearly time to put my face mask on, thankfully accept my access to cutting-edge medical science, and suck up the fatigue and immunocompromised-ness. Because fatigue is a lot easier to treat than cancer.

P.S. Amusing line overheard in waiting room from a woman explaining to a friend that her case is very unusual: “So I asked, ‘What noise does a guinea pig make?'”

Prayer, Science, and Pointy Things

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Well, I’m glad to say that I continue to do well medically, and I really appreciate that all the more because two very special people I know (including one who had been in a remission that raised hopes he might be out of the woods) have gotten bad news in their own battles with cancer. My prayers and best thoughts are with them, and with a couple people in similar situations whose blogs I’ve been following.

Actually, if you are a praying sort yourself, please pause for a moment now to pray for A. and T. (names abbreviated for privacy). They are both amazing people.

Other than praying, I’ve been preoccupied with a) resting, b) avoiding sunlight, c) resting, d) feeling very fortunate, e) a few organizing projects at home, f) resting, and g) researching the best ways to avoid sunlight.

Don’t mess with me–I have pointy things. Extremely small pointy things.

Also, a couple weeks ago I also started participating in a study at Johns Hopkins. It’s not the kind of study you get into when all else fails, but rather the kind where they are trying giving additional medicine to people who’ve had successful transplants, in an effort to cut the significant rate of post-transplant relapse into MDS or leukemia (and, if my MDS comes back, it will turn into leukemia). It’s the “hit it with everything you’ve got while it’s down” philosophy which is so inappropriate for, say, warts, and so appropriate for deadly malignancies. In this case, the extra medicine is more Vidaza (which I got as a pretreatment for the transplant), plus sargramostim, a white-blood-cell booster which will counter Vidaza’s effect of suppressing white blood cell production. Apparently, based on studying cells in the lab, the doctors have good reason to believe that these drugs work best in combo. When I got Vidaza before, of course, I was not eligible for white-cell-boosting drugs because they could have boosted the cancer in my bone marrow, but that cancer is either gone (in which case this is all overkill) or at undetectably low levels (in which case this could juice up my good, donor-flavor white blood cells to finish off the cancer and save my life).

Of course, we don’t know if it will work–that’s the point of it being a study–but they will keep very close tabs on me while I’m in the study.

The practical impact of all this is that, one week a month, I have to drive to Baltimore every weekday to get a Vidaza shot (because the study protocol is too rigid for me to get it at Dr. Virginia’s office). Also, I have to give myself a shot in the stomach for ten days running (that’s the sargramostim, which boosts my white blood cells). It turns out that sticking a needle into my own body is way easier than I thought it would be, but on the other hand it is a huge drag to mix up the drug–I have to draw a ml of sterile water from one vial, inject it into a different vial with the drug powder in it, shake it to mix, then draw a half-ml out of that vial to put into myself. I keep thwocking at the syringe to get rid of stubborn air bubbles that would throw off the measurement, plus the stupid syringes have the lid stuck onto the needle far more securely than the needle part is stuck onto the body. Fortunately I’ve only had them come apart when empty, so I could just start over with a new syringe and not waste the heinously expensive medicine.

In other news, something about the combination of drugs (and a blood cell dip which is apparently not unusual 60-100 days after transplant) completely kicked my butt during the week of Vidaza shots. Fatigue-o-rama. Thanks for being there, sofa!

Several people I know seem irked that the study is not paying my expenses (Kaiser is paying for the medicine, and I’m paying for copays and zipcar or MARC train to get to Hopkins), but personally I feel that these expenses are well worth it for something that could be saving my life. I think it is pretty cool that, if it does save my life, that information will help save other people’s lives too.

And, it does make me feel pretty badass to have my own homemade sharps container in my kitchen.

Drumroll please…

Well, I got my bone marrow biopsy on Thursday (along with a bunch of other tests), and sister who’s donating to me got a bunch of tests. The results we have so far look fine, so the key thing will be my bone marrow biopsy. If it shows that the Vidaza has decreased the amount of malignant cells, as I think is likely, we’ll go ahead with the transplant. I should hear sometime between Monday and Thursday morning (when I and my dad meet with the MDS specialist at Hopkins).

In between now and Thursday, the radiation oncologists will do some last-minute consulting about the total body irradiation part of the prep regimen, given my pre-existing radiation damage to my spinal cord (damage about which I’m not complaining–the lymphoma never came back, after all, and I can still walk a mile a day with a cane for balance).

I feel like I’m at the top of the roller coaster…

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…

Transplant, probably. Sushi, probably not.

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photo under Creative Commons license from Lotusutol: www.flickr.com/photos/lotusutol/13075942/

photo under Creative Commons license from Lotusutol: http://www.flickr.com/photos/lotusutol/13075942/

Well, yesterday I talked to an MDS specialist at Hopkins (whom I do not have the energy to give a snarky nickname), and got moderately encouraging news. Let me, right up front here, say that, as is the case with all my major oncological appointments, I did feel as if my brain was working about as fast as I could run through hip-deep molasses. Although Dr. No-Snarky-Nickname is an excellent communicator, I probably got some things wrong as the mistaken preconceptions in my head collide with the words that were actually being spoken aloud.

On the plus side, it sounds as if we are likely to move ahead with the transplant, probably in April, although everything depends on a battery of tests in March. It appears that this transplant will be way less likely than my original autologous transplant to lead to secondary cancer in the future (or more precisely, as this is treatment for a secondary cancer, a tertiary one). So, yay for that!

On the downside, though my platelets were up some more, my white counts were down and (before he even saw them), Dr. NSN didn’t offer the effusive, definitive statement I wanted that my MDS can be classified as “responsive” to the Vidaza, which is a glorified status that lets you get your name in the paper, win concert tickets and other valuable prizes, and breeze past airport security without even taking off your shoes. Seriously, though, it is even better than those things because, apparently, MDS that responds to Vidaza also tends to respond better to other treatments (although this is all possibilities, and My Mileage Will Vary). Dr. NSN allowed as how If I had blood counts that were normal, at least for part of the month, would count as a sign of responsiveness, but the real gold standard is the bone marrow biopsy, which I’ll get in late March.

Dandy blood counts before that might be unlikely; my white count was down to a pitiful .7 yesterday (and again today at Dr. Virginia’s when I went for Vidaza). This strongly suggests that the big spike I had in early January (to levels I hadn’t seen since 2011) was only made possible by a confluence of two–count ’em, two–factors working together: 1) Vidaza’s primary effect of making my MDS less, and 2) the extra week I got between Vidaza cycles at Christmas, which gave me a break from Vidaza’s side effect of lowering white counts.

Disappointing white counts, but platelets keep going up.

Since Dr. Virginia says he wants to continue with the Vidaza full steam ahead–stomping on the malignant cells in my bone marrow is the most important thing–I fear I might not get up into the normal range again this month. There go my visions of going out for sushi, eating freely of salad, and attending crowded parties a bunch for the next couple months.

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.

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

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…

Moment to cherish: Tasty Kabob

Because Vidaza doesn’t affect my appetite much, I am able to enjoy Tasty Kabob when the truck shows up in my neck of the woods. I was hoping the truck would show up tonight, and it did!

I’m not sure why it’s called “Kabob,” as there are no sticks involved, but it sure is tasty. And, at this point, the guy in the truck recognizes me and puts on two gloves so he won’t absent-mindedly backhand the foil with his ungloved hand before he puts my gyros into it.

Enough yumminess for dinner tonight and lunch tomorrow!

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Tag Archives: vidaza

Compelling Explanations

Prayer, Science, and Pointy Things

Drumroll please…

My small bit to fight individual obsessiveness/national medical costs

Transplant, probably. Sushi, probably not.

How’d ya like those data?

Bit of a Dip

Whoo Hoo!

Another open note for Phil

Yay for platelets!

Moment to cherish: Tasty Kabob