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.