MDS: Back in the USSR

Houston, we have a problem. The Great New Year's Eve Platelet Transfusion didn't take.

Yesterday—Sunday—we finally gave up on pretending I could muscle through another day. Not a hard decision since I'd reached a point where I couldn't even walk a flight of stairs.

So, here we are. Back in the hospital.

And no wonder I couldn't walk the stairs:

• Platelets: 4,000
• Hemoglobin: 7

The lowest numbers ever.

I was immediately put on a variety of IVs, and we spent the night transfusing one unit of platelets and two units of whole blood. This literally took all night, complemented with checking of vitals every 30 minutes.

No sleep was achieved.

We are now awaiting the blood culture results, along with the new, post-transfusion counts. Tonight we'll likely be enduring another bone marrow biopsy.

The bigger question, of course, is this: why would the counts drop so precipitously so quickly?

And, why did the platelet transfusion not take at all?

New Year Celebration MDS Style

A quiz: How does the happy MDS patient celebrate the New Year?

1. Go out to dinner.
2. Go out dancing.
3. Go out to dinner and dancing.
4. Go to Times Square.
5. Spend 9 hours in the Emergency Room.

Answer? Whadda you think?

This adventure began Wednesday afternoon when a pain shows up in my left hip. It doesn't go away, but radiates down the leg to the calf. It feels something like sciatica, but it's not. It keeps me up most of the night. By morning, I'm more of a basket case than has become the norm these past two weeks.

Penny calls Dr. Dr. O says meet her in the ER. She can do tests there she can't do in the office.

We arrive at about 11:30. Blood is taken. Many questions are asked and re-asked. The victim—uh, patient—is parked in a room that has a door with no door knobs. It's the psycho room. The victim—uh, patient—informs the nurse that he's the son of a psychologist and fully capable of acting nutty, if that would prove entertaining.

Then—we wait.

Each of us reads a book and a half.

Finally, the blood results come back:

• Platelets: 10,000

The victim—uh, patient—needs a platelets transfusion. The "doctor" wants to admit the victim—uh, patient—to the hospital, as soon as a bed can be found.

Oh crap. First Easter; now New Year's.

But—wait. Along comes Dr. O. "You don't really want to spend the night in the hospital, do you?" she asks.

No.

"I'll have you transfused and sent home. I'll see you Monday, anyway."

But—wait. Some kind of debate breaks out between Dr. O and Dr. ER. Dr. ER thinks the victim—uh, patient—has insisted on this course of action. She, along with three other personnel, must be re-educated on that point by the victim—uh, patient—while the victim—uh, patient—reminds everyone that he's not a doctor, nor does he play one on TV. It's not his decision.

Dr. O comments that "they're not used to seeing platelets
this low, but we see it all the time." Then, she leaves. We never hear anything more about "tests" that ca be done in the ER.

Then—we wait.

Blood is typed. (A-positive, in case you're wondering.)

Then—we wait.

Platelets finally arrive. The transfusion takes 90 minutes.

The nurse arrives to remove the IV, the fourth nurse the victim—uh, patient—has dealt with in this episode, and, while being upbeat and friendly expresses concern multiple times that "normally with counts this low we'd never send you home."

The victim—uh, patient—smiles. Get me outta here, he says.

We're home in time to see the ball drop, if the ball dropped somewhere in the middle of the Atlantic Ocean. The victim—uh, patient—settles in to watch what's left of AMC's "Three Stooges New Year's Marathon".

So, now the victim—uh, patient—is filled with someone else's platelets and, well, he feels about the same. Except the leg doesn't hurt any more. That stopped hurting just about the time we arrived at the ER.

Happy New Year.

MDS: Sleeping the Day Away

Another day. Another day of napping.

Slept from 9:30 til 11:15 this morning. From noon-thirty til 2:15 this afternoon. And, am now about ready to go back to bed.

Was running a low-grade fever yesterday, which started me to worrying. Who the hell knows what a fever might mean with MDS? Whatever it might really mean (likely, nothing), it raises the specter of vulnerability that’s been looming since Day 1: susceptibility to getting sick.

Today, the fever’s gone. The sleep continues.

I take this napping predilection to be a sign of the low blood count. It’s not dissimilar to what I was feeling when I was in Minnesota with the MDS first manifesting itself.

That begs the question—how low is the actual count right now?

We know what it was on Monday. But, is it lower now? I see little signs that it might be (i.e., the site where the blood was taken on Monday shows a bruise instead of just disappearing). But, what’s a real concern and what’s my imagination?

And, at what point do you call the doctor? Especially given that the day after tomorrow is Christmas, and then it’s the weekend.

And, if you do call, which doctor do you call?

Well, this thing put me in the hospital for Easter. Maybe it’s on a pattern to flare up for Christian holidays. Silly? Yes. Still, a silly superstitious notioin seems as logical as anything else I’ve encountered in dealing with this disease.

Enough. I’m going back to bed.

MDS: Blood Count - How Low Can You Go?

Yesterday’s count:

• Platelets: 26,000

This number hasn’t been that low since I left the hospital last April.

Dr. O says it explains why I’ve been so tired during this past Shots Week. She also reminds me that the count goes down during Shots, then rebounds later.

But, I’m not pretending. This bothers me. A couple of week ago the count was 179,000. Now this?

Okay, okay—I’m probably spending too much time and energy ruminating about these numbers. They seem to go up and down like an elevator gone wild. And, yes, I know all too well that Shots Weeks make me feel like doo-doo.

But, if you’re stuck lying around on the couch for a week watching old movies and football game you don’t care about, it’s not difficult to overly focus on what’s bothering you.

Which leads to all kinds of bad mental games: i.e.

• fixating on your own mortality;
• wondering how your own body, seemingly doing just fine nine months ago, has become something rather delicate;
• trying to understand why TV advertising is so stupid.

But, the hardest part is trying to get your head around the idea that this routine—these week-long sessions of feeling terrible and being useless—are going to go on forever.

Whatever forever is.

So, if there are 10 or 20 more years to live, I’m going to feel like crap for one-quarter of the time?

Now there’s a great prospect for you.

But, as the pundits say—it beats the alternative.
                                       

MDS: Two Steps Forward - One Step Back

Well, judging from the last two weeks, it seems like we’ve taken two steps forward and one step back. Let’s start with yesterday’s blood counts:

• Hemoglobin: 12.4
• Platelets: 63,000

Needless to day, that platelet count is not what was expected or wanted, especially after some delightfully high counts in recent weeks.

And, there are other developments.

Small lumps began to appear all over me about a week ago. Unlike the inflammations already present on the lower legs, these have no color, nor do they hurt or itch. They’re just there.

• on the arms
• on the chest
• on the back
• on the beautiful tush.

I’m reminded of our beloved family dogs who’d grown old and developed fatty tumors.

So, now I’m an old dog. Just may have to change my name to Lumpy.

You remember Lumpy, yes? Wally Cleaver’s friend from Leave It To Beaver.

So, this Lumpy, accompanied by his wife in hopes that together they might actually remember the answers to their questions, ventured to Dr. O’s yesterday, reciting the following symptoms:

• fatigue
• headache
• some light-headedness
• fatigue
• body aches
• random shooting pains
• fatigue
• inflammations getting worse on the left leg, better on the right
• fatigue
• and, lumps.

Dr. O’s immediate diagnosis:

• these are likely random leukemic cells that are popping up (which is what the red inflammations contain, as well)

The reasons:

• The fatigue comes from the low platelet count;
• and both the lumps and fatigue result from too long between Vidaza and Depatoke treatments.

The concern:

• Why are they happening?
• Are the leukemic cells in the bone marrow?

With the drugs re-started as of yesterday, the hope is that the lumps and inflammations will abate somewhat. The fatigue should lessen in the next between-shots time.

And, the doc announced in no uncertain terms, the next down time will be shorter. From now on, we’re back to a strict one-week-on/three-weeks-off schedule.

Okay. I never really wanted to extend the period between shots. I’d much rather we do this on the same week every month. Much easier to keep track that way.

I’d like only five shots, not seven. Not likely in the foreseeable future.

And, if the lumps, etc., don’t improve, it’ll be another bone marrow biopsy.

Everyone seems to agree that this diagnosis explains the fatigue, lumps and other symptoms of the past week. I’m really too tired to be discouraged, even if the winter travel schedule will have to be adjusted to fit the meds schedule.

I’ll just sit passively, let ‘em shoot me up, and do my best to stay awake.

MDS: Vidaza Postponed

Dr. O threw me a curve ball yesterday. Maybe it was more like a change-up, where the ball comes in so slowly that you swing so early and so hard that you almost fall over.

She postponed the Vidaza shots til next week.

You'd think this would make me happy. But, no. It just threw me off balance.

I'd been busy Sunday evening indulging myself in some pre-shots misery—you know, "Oh woe is me; in 48 hours I'm going to feel like crap"—and by yesterday morning I'd built up my resolution to once more sink into discomfort.

Plus, I'd kind of psyched myself up for the grand 5-shots sequence experiment, which will begin with the next series.

And, worse, I'd called last Thursday to confirm we were doing shots this week. We were, I was told.

So, I swallowed my Zofran pill, and drove to Dr. O's office. But, when I got there, she asked if it would be okay to do shots next week. She was going to be in NYC, you see, a few days this week.

Well, at least she asked, rather than announcing.

"We'll just check your blood today," she said.

Good news there:

• Platelets: 156,000
• Hemoglobin: 12.1

Still, I'm all aflutter. I'd made myself ready to be useless, and I'd taken the Zofran for nothing.

Now, here I am with my bowels semi-clogged from the Zofran, but the rest of me perfectly functional.

I mean, really.

I've lost my excuse for doing nothing this week.

Guess I'll just have to do something.

MDS: Today's Blood Counts & Other Good Stuff

Today, lots of good news na things I want to hear, starting with this week's blood counts:

• Hemoglobin: 12.6
• Platelets: 101,000

Dr. O was particularly pleased with the hemoglobin counts.

She also said we'd add an extra week between shots and, even better as far a I'm concerned, said it was alright with her to try doing five-shot sequences rather than seven.

Excellent.

Being shot-up from Monday-Friday only should provide a huge psychological lift. It should also give me 2-4 more functional day per month.

Let's just hope it works.

And . . . this just in:

The skin biopsy apparently show nothing new. Dr. D says if the bumps need to be treated, it's have to be done systemically, and that's Dr. O's call.

Now—enough with the medical stuff. Penny and I are off to London for a week. Pip-Pip, and all that.

MDS: Up for the Count

Yesterday's counts:

Platelets: 139,000
Hemoglobin: 12.6

I think I'm finally getting it. The counts go highest when I feel the worst—as the end of the shots cycle approaches. After that, they descend for a couple of weeks, then ascend for a couple of weeks.

Yes, it's true. It has taken me quite a while to figure this pattern out. But, as the mystery and thriller writers often remind us: things are best hidden in plain sight.

So, here I am:

• arms itching/hurting like crazy
• fatigue engulfing me
• legs still breaking out in mysterious bug-bite-ish bumps
• stomach in flux from liberally mixing Zofran and Metamucil
• my sweet tooth run amuck, as often happens when I feel poorly

and I'm showing some of the best counts since this all started.

Good thing I know I'll feel much better in a day or two. Otherwise this high-count/feeling-lousy phenomenon might be discomfiting.

Uh-huh.

MDS: Good Blood Count plus Questions Answered & Not

Yesterday's blood counts:

• Platelets: 119,000
• Hemoglobin: forgot to ask . . .

. . . or I didn't hear Dr. O when she said it.

I was too busy trying to remember all the questions I intended to ask.

Like?

• Did the thyroid function test results come back? (Answer: no; have to do that over again.)
• When she said the frequency of Vidaza shots could be decreased, did she mean after nine or 10 months total or in nine or 10 months? (Answer: nine or 10 months total; that's good.)
• Can shots be skipped in January, when I've two major trips scheduled nearly back-to-back? (Answer: we can be flexible.)
• Can flu shot(s) be done by her, and when? (Answer: none; despite my concerted effort to remember all the questions, I couldn't remember that one. Must ask today.)

So many questions. So little brain power.

A note about the thyroid: back in the first or second entry of this blog ("Backstory") it was noted that his entire adventure began with a pre-surgery MRI of my shoulder in which an unexplained "anomaly" appeared in the humerus bone. That led to scans of all kinds which, along the way, turned up hypothyroidism. That must be monitored every six months. I figured it could be done from Dr. O's office, since she's taking blood from me all the time. It can. But, the sample sent to the lab two weeks ago traveled with the wrong instructions. Thus, the do-over yesterday.

Still, the big picture continues to look pretty good. Getting that platelet count over 100,000 provides a huge psychological boost me for. Its carries a sub-text of "now you can do anything you can do"—ride your bike, knock your head against the wall, ski, eat your heart out, run, fall down the stairs, whatever.

And, I guess I've earned my certificate as a professional needle recipient. Four of them yesterday:

• finger prick for blood counts
• two for Vidaza
• one for thyroid.

Don't tell me I don't live an exotic and rewarding life.

MDS: Good Blood Counts & Good Vidaza News, too

Good news comes on the heels of another football Giants victory (3-0).

Yesterday's blood counts:

• Hemoglobin—12.2
• Platelets—97,000

I'm not personally thrilled with the 97,000 count because it remains below the magic 100,000 mark (magic for me, anyway, although I may be the only one). But, Dr. O was very pleased.

And, anyway, that count comes after Non-Shot Week Two, which means by the time we go back to shots next week, it'll likely be up some more.

The better news:

Dr. O has confabbed with Dr. MDS about the bone marrow biopsy report. Dr. MDS has declared that we should

• continue with the Vidaza treatments
• forget about a bone marrow transplant for the foreseeable future
• and plan for a reduction in Vidaza treatment frequency in either 10 months time or after a total of 10 months of treatment.

But, which is it? Ten months time or 10 months total? I'm not sure.

Okay—go ahead and accuse me, as my mother often did, of not listening. Or of not absorbing what I've been told. But, c'mon—I'd just spent an hour-plus in the waiting room, the joint was jumping with patients in all examining and treatment rooms, and, after all, Dr. O speaks with a pretty strong Indian accent.

Those are my excuses.

No matter. Either in 10 months or after 10 months total, we're talking about shots only every four or five weeks instead of every three.

I'll take that.

MDS: I Got the Low-Down Blood Count Blues

Yesterday's blood counts:

• Hemoglobin—12.1
• Platelets—75,000

The 75,000 number concerns me.

Dr. O continually reassures me that it's normal for the count to drop after Vidaza Shots Week.

But, looking back, I don't recall any recent time it's dropped so low.

And, when it dips below 100,000, I begin wondering (wondering—not worrying; not yet, anyway) what that means. Because Dr. MDS had said that above 100,000 meant I can do whatever physical activities I want.

So, if I intend to ski—which I certainly do—does that mean I can't ski during certain weeks? If it does, how am I to know what the platelet count is at any given time? Monday's 75,000 could be Thursday's 110,000. Or Saturday's 150,000.

Do ski resorts have blood sampling stations adjacent to their lift ticket windows?

And, let's not even talk about low platelets short-sheeting my energy.

Meanwhile, the hemoglobin and white cell counts remain excellent. So, what exactly does that mean, anyway?

This is some kind of proverbial or cliched psychological roller coaster ride. But, jeez, it's my daughter who likes roller coasters, not me. I'd rather slide on snow, thank you.

MDS: Of Blood Counts & FISH Tests

Another Shots Week has been survived. You remember the old joke, "I flew here all the way from California and boy are my arms tired!"?

Well, I've once again endured 14 shots in the upper arms and, no they're not tired, but boy are they sore and itchy.

Yesterday's blood counts:

• Hemoglobin: 11.7
• Platelets: 98,000

These counts are beginning to drive me nuts. Sure, Dr. O says they're supposed to go down while the shots are in progress, and then move back up during the following three, shots-free weeks. Call me an alarmist, but when the counts top out one week at 169,000 and a few weeks later bottom out at 98,000, I find it confusing at best, unsettling at worst.

It's enough to make a person want to bore into his own bone marrow and demand that some molecules in there tell him what the hell is going on in there.

Speaking of confusing, the rest of the genetics report from the bone marrow biopsy came back, and that has really confused me.

As you may recall, the FISH study seemed to indicate that the chromosomes were okay. Now the regular test indicates no change.

Stop! No change is actually a good thing. We know that once the chromosomes show damage, they can't rebuild themselves. So, no change means that we're holding our own and the syndrome isn't drifting towards a worser level of MDS or leukemia.

So, what the hell does the FISH test report mean? Beats me.

It's enough to make one stop contemplating the question "What's the meaning of life?" and devote all waking hours to pondering the meaning of FISH.

Anybody got a worm?

MDS: This Shots Week Stinks

Whoa! this Shots Week has begun poorly. Have been feeling on Tuesday as tired, constipated, achy and cranky as I expect to feel on Friday or Saturday.

Slept for—count 'em!—12 hours Monday night. Woke up just as tired and useless as when I went to bed.

What's that all about?

Naturally, speculation runs high in my tiny brain. Could it be

• that we had an extra week between Shots Weeks due to the bone marrow biopsy, so I was reacting more strongly to the Vidaza?
• that I'd had too much weekend (golf Friday, wedding and poor night's sleep Saturday, no real naps Thursday through Sunday)?
• worst—that the blood counts were down?

Wrong on that last count, anyway. Yesterday's counts:

• Hemoglobin—12.4
• Platelets—118,000.

Well, that's good news, anyway.

So, here it is Wednesday morning, after another long sleep night (9 hours), and the fatigue factor carries on. The old TV ad for Geritol is running through my head: "tired blood."

Tired of tired blood might be more like it. Also, tired of bowels acting like a recalcitrant two year-old. They won't move even though they know that want to, have to, need to.

Pass the prunes.

MDS: Yesterday's Blood Counts

The wandering MDS patient returned yesterday to the beneficent oncologist after 12 days traveling for the blood letting—uh—blood counting ritual.

Yesterday's counts:

• Hemoglobin: 11.4
• Platelets: 103,000

Now this seems to me to be significantly down from the last counts

• (12.4 and 169,000)

but Dr. O did not seem phased. "Your blood is looking good," she said, smiling as she emerged from the mysterious room wherein such numbers are determined.

"Those are lower," I replied cautiously when she reported the numbers. "Are they really okay?"

"It's the Vidaza," she reported brightly. "It makes the counts go down and then they come back up. Next week, they'll be back up, you'll see."

I hope so.

Returning to this ritual proved a bit strange, after missing it for what seemed to be quite a while but was really only a week. I guess it's an out-of-sight out-of-mind thing, but driving home I lapsed into rumination on vulnerability and remembering that I actually am supposed to be sick. I hadn't done that at all while traveling.

Perhaps I'm better off traipsing around the country being overfed like a cow being prepared for the stockyards. There, my consciousness is redirected to feeling over-stuffed and fat rather than ill.

Dr. O insisted cheerfully that we'll see higher blood counts next week.

Next week.

That's when I report for the next bone marrow biopsy.

Ah, the things we get to look forward to. Can't wait.

MDS: More on Blood Counts

Following up on my posting of this week's blood count, my ever-astute spouse has discovered the following reference on MedicineNet, which explains blood counts.

Meanwhile, for those who prefer not to follow the link, here are a couple of paragraphs that offer a succinct review/explanation of platelet and hemoglobin counts.

Platelet count:

• The calculated number of platelets in a volume of blood, usually expressed as platelets per cubic millimeter (cmm) of whole blood.
• Platelets are not complete cells, but actually fragments of cytoplasm (part of a cell without its nucleus or the body of a cell) from a cell found in the bone marrow called a megakaryocyte.
• Platelets play a vital role in blood clotting.
• Normal range varies slightly between laboratories but is in the range of 150,000 to 400,000/ cmm (150 to 400 x 109/liter).

Hemoglobin count:

• Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.
• Hemoglobin is made up of four connected protein molecules (globulin chains).
• Each globulin chain contains the heme molecule, embedded in which is iron that transports the oxygen and carbon dioxide.
• Normal hemoglobin count for middle age males: 12.4-14.9 gm/dl.

So, we can see that this week's counts (165,000 and 12.4) are low-normal. A very encouraging sign. Indeed, the 165,000 platelet count is as high as my numbers have ever been—going back even to before this MDS adventure began.

Even though I keep involuntarily remembering that, while the Vidaza is raising the counts, it isn't a cure but a form of maintenance.

Still, for the present, it's all good.

Yesterday's Blood Counts

Yesterday's MDS blood counts:

• Hemoglobin—12.4
• Platelets—165,000

"Your blood is looking very good, sir," is what Dr. O said with a smile as she entered the examination room ominously brandishing a pair of needles.

Indeed. 165,000 is as high a platelet count as we've seen. Ever.

Then the Vidaza-filled needles were inserted, and by early afternoon the

• headache
• body aches
• slight fever
• slight nausea
• fatigue
• and itching injection sites

had all set in.

You've heard of TV's "sweeps week?"

Welcome back to "shots week."

Wouldn't want to feel too good for too long, however. After all, I am sick, eh?

MDS: Vidaza and Reduced Blood Count Blasts

This week's good blood count got me to thinking (always a dangerous thing). A pattern does seem to be emerging: counts go down during Vidaza treatments, elevate a week and two weeks later.

We won't have counts for next week. We're getting the hell outta town and having a Maine vacation.

But, the new numbers and increased energy started me, with my usual trepidation, doing some Internet searching, where I discovered a recent press release.

It says that "VIDAZA significantly extends overall survival and helps patients with myelodysplastic syndromes (MDS) become or remain red blood cell transfusion independent. Patients who benefitted included those with higher-risk MDS or acute myeloid leukemia (AML) with 20-30% blasts, as defined by the World Health Organization (WHO)."

Now, I'm neither suffering from AML nor are my blasts at 20-30%— they're less than 5%.

(Blasts, by the way, are young blood cells that mature into red blood cells, white blood cells, or platelets. Excess blasts means an increased number of immature blood cells in the bone marrow.)

Okay, we already knew most of what the press release states because it confirms an earlier study. And, as has always been the case, the studies involved patients with worse situations than mine.

But, the idea that Vidaza might reduce blasts is encouraging.

The Vidaza Web site says of earlier studies that the major percentage of patients who responded when treated with VIDAZA achieved either a

• Partial Response (PR): No blast cells in the bloodstream. The number of blasts in the bone marrow has been reduced by at least half. Blood counts (red blood cells, white blood cells, and platelets) are at least halfway between where they started (baseline) and normal. To be considered a PR, blood count improvements must be maintained for at least 4 weeks.

Or a

• Complete response (CR): No blast cells in the bloodstream. The number of blast cells in the bone marrow is at or near normal. Blood counts (red blood cells, white blood cells, and platelets) are also at or near normal. To be considered a CR, blood counts must remain at or near normal levels for at least 4 weeks.

I'm scheduled for another bone marrow biopsy towards the end of August. The blast count will be of particular interest.

Meanwhile, the study cited in the news release carried on for about two years. I'm more than happy to continue doing what I'm doing for the next two years if that's what it'll take to see reduced blasts and increased platelets.

Who knows? Maybe my golf game will improve by then. Or, perhaps more likely (although not very probable) maybe the Mets and football Giants can win championships by then.

Do you believe in miracles?