Numbers don’t lie–except when they do. I met with my medical oncologist, Dr. Mathew Luke yesterday. That went fine. Still too early to know if pomalidamide is working for me. But I was devastated by my CBC results.
Such a simple thing. A complete blood count (CBC) measures the levels of red and white blood cells and platelets in our blood. Revlimid has always suppressed my white counts, specifically my absolute neutrophil count (ANC). If your ANC number drops too low, you become what’s called neutropenic. Without getting into specifics, a patient is considered neutropenic when their ANC count drops below 1.0. Below 0.8 and most oncologists hold treatment until the number comes up again. Sometimes neupogen shots help, but that’s nothing more than a temporary fix.
Bear with me and I’ll deliver an important takeaway message. I had been excited about how awesome my CBC numbers had been since I started taking pomalidamide (Pomalyst, or POM for short) three weeks ago. Instead of depressing my already marginal blood counts, my numbers had soared. Hallelujah! My white and ANC counts were up higher than they had been since before I started Revlimid therapy seven years ago. My platelet number was way up, too.
Why is this important? The obvious reason: less risk of infection. But an even bigger deal: higher counts would allow my myeloma specialist the option of prescribing myeloma therapies that tend to suppress blood counts.
Here’s an excerpt from a post I wrote about it back on June 25th:
Now for some pleasantly surprising news. I dropped by my local oncologist’s office for a simple CBC yesterday. My numbers were amazing! While still on RVD three years ago, my white count was at 2.3 and dropping. My absolute neutrophil count (ANC) was only 1.3, approaching neutropenic range. My platelets were below 90. Off Rev for 10 days, I expected POM to continue to suppress my counts. I was shocked to see my numbers:
Except for my red counts, which are normal for me, the other three numbers are all higher than they’ve been since my autologous stem cell transplant in July, 2011. How about that!
I’m not a big numbers guy. These are the only ones I follow, along with my M-spike. If I’m dragging I look to them for confirmation. This morning I’m a bit fatigued, even on what should be my most up and active dex day. Dr. Roy warned me POM may do that. He also predicted POM would be a lot easier on my numbers. Right on both counts…
My next set of numbers the following week were even stronger. It was a miracle!
I opened today’s post this way: “Numbers don’t lie–except when they do.” Yesterday’s CBC numbers were horrible; even lower than they were before I started taking POM three weeks ago. What gives? I asked Dr. Luke about it: “How is it possible for an ANC count to go from 5.8 (last week) to a concernedly low 1.2 in a week?
Dr. Luke and I thought about it a few minutes. “Doctor, does taking dexamethasone in large doses effect a patient’s blood counts? “Yes.” He responded. But why hadn’t this ever happened to me before?
The explanation was simple. For the better part of seven years, I had been taking dex the day–or day after–I went to clinic on Wednesdays. back in Wisconsin and then in Weeki Wachee on Florida’s Gulf Coast, Wednesday was “the day.” I had a standing appointment at Florida Cancer Specialists every Wednesday afternoon for almost five years; several years while taking Velcade.
The routine was simple. Blood work, see my medical oncologist once a month, IV and later sub-q Velcade. Oral dex–20 or 40 mg–the evening after treatment. Same routine allowed us to monitor my counts on the same day and time. I had done it this way so long that it was second nature. But things changed recently.
After fighting my insurance company, I received 21 4 mg POM capsules on a Friday. Since Velcade was no longer part of my therapy, I took my 40 mg dex Sunday night; I wanted my body to have a few days to adjust to the POM. I also wanted to watch for any early, unexpected side effects.
But I wanted to get back on a schedule. Dr. Luke is in his Amelia Island office every Tuesday. I would take dex Tuesday night, just like I would have done on Wednesdays.
So, moving in that direction, last week I took dex Monday night. This week I planned to take it on Tuesday–or as Dr. Luke and I decided yesterday–every Wednesday before bedtime like I had for years.
See where I’m going with this?
Taking dexamethasone before my blood draw screwed up my numbers.
That’s the takeaway message. Try and be consistent about when and where your blood is drawn. Same time, same lab, same meds prior to testing. It may not make much difference much of the time. But if you want to get an accurate feeling for how a set of numbers is trending, the more consistent your schedule, the better.
Now back to my eye opening reality check. Before dismissing this as “Blood counts go up and down. No big deal.” I want to share my very real concern. My bone marrow has lost it’s elasticity. It takes longer and longer for it to recover. I’ve heard from a number of patients that are unable to continue treatment for this reason. If things don’t turn around quickly, most die within a year. That’s reality.
All of the pharmaceutical firepower in the world doesn’t matter if our bodies aren’t strong enough to withstand treatment.
I know, I know: I’ll be OK for now. But a year or so down the line? This isn’t good.
Pattie suggested the fact my ANC count had actually held steady for five weeks at 1.2 is a good thing–and she’s right. My bone marrow may recover and become stronger with time. And if POM works, my specialist, Dr. Roy, may be able to cut my POM dosage in half; reputable reports from inside Mayo Clinic have shown 2 mg of POM works as well as 4 mg.
I understand that. I haven’t lost hope. But I’m a realist. Feeling better about it all today, although I’m really dragging.
The low numbers do explain something. I was puzzled by the way my body had been reacting; mouth sores, no energy and feeling extra stiff and sore. All signs that my platelets had dropped below 100, and my white counts were low. Yet my numbers were way up. I should have suspected something was wrong. Denial? Wishful thinking?
Numbers may lie, but I know my body! I was right and the numbers were wrong. Guess I’ve got that going for me!
Feel good and keep smiling! Pat