My Chronic Lymphocytic Leukemia (CLL): More Good News

PLEASE NOTE I HAVE REVISED THIS AFTER RECEIVING THE HARD COPY OF MY FLOW CYTOMETRY REPORT. THE NEWS MAY ACTUALLY BE EVEN BETTER.

I still have CLL, but less of it.

It's in remission and it's actively retreating, but I still have residual disease.

Today I learned that my flow cytometry showed that I have a few cancer cells floating in my blood stream.

Here's how I know.

Essentially all B cells, good or bad, cancerous or benign, have a CD19 marker but are not supposed to have the CD5+ marker on their surface.  That's usually found only on T cells. Those that have both are my abnormal CLL cancer cells.

Flow cytometry which looks very deeply at thousands of cells was able to find only 28 of such cells per 10,000 cells. That means only 0.28% of my lymphocytes are clonal.

Let's do the math. I am a little shaky on my assumptions here, so please correct me if I'm wrong. Of every 10,000 lymphocytes that I have, only 28 are my CLL clone. That is an amount a microscope could never find, but the flow cytometry lasers can spot easily. If my nodes and bone marrow were clean (not likely but I can hope), I would be in a complete remission (CR), but minimal residual disease or MRD+. How important it is to be MRD- in the era of TKIs is a matter of debate.With FCR, it was very important in terms of prognosis.

There are 1,400 lymphocytes per millionth of each liter of my blood and of course there are a million microliters in every liter. We we all have about 5.6 liters of blood, so 1,400 x 1,000,000 x 5.6 x 0.028 = about 22,000,000 cancer cells lolling around in my blood stream. Sounds like a lot, but it's nothing.

Those millions and millions of peripheral white blood cells are not even the one that are proliferating. That's done mostly in the nodes, so my nodes are pumping out less cancer now. I know that because in October, the same count was 47. That's a 43% drop in the last 6 months, suggesting my CLL is still responding nicely to the ibrutinib.

After nearly two years, it is still working its magic inhibiting the B cell communication pathways needed to survive and reproduce.

That's truly great news.

Reassuring news.

Quite remarkable if we stop and think about it. Almost two years out and this gentle giant of a therapy is still dropping my leukemic cell count.

To get some perspective on my results, compared to my measly 220,000,00 cells in my entire blood stream, some of my friends with active disease can have half a million lymphocytes or more in each and every  millionth of a liter of blood and nearly everyone of those is a part of the evil clone's posse. 500,000 x 1,000,000 x 5.6 is a big number. The counts of almost anyone with active disease is several orders of magnitude greater than mine. My count of CD19/CD5+ cells is trivial in comparison.

The other good news is that my overall T cell count is climbing with appropriate CD4/CD8 ratios. This could mean my ability to fight off infections is improving and more importantly my bone marrow and the rest of my immune system is healing.

My CLL has always been more nodal, hidden in my belly, so the CT scan at the end of June will be critical, but this is a positive harbinger. Makes sense that if I harbored any significantly growing nodes that were resisting the ibrutinib, they would be pumping more cancer out into the blood and the exact opposite is happening. But the relationship between the size of the nodes and the CLL count in the blood is not always so tight. Still it is good news.

I will be posting more videos from ASH soon and am preparing to attend ASCO in Chicago at the end of May.

I am Sick - Or Maybe Not

For the first time in years, I have come down with something.

Or maybe not.

Here's the story.

Yesterday I got the relatively new conjugated more antigenic protein based pneumonia vaccine, PREVNAR 13.

My last pneumococcal vaccine, the weaker but broader spectrum Pneumovax, and the older PREVNAR 7 were administered more than seven years ago when I was first diagnosed in the hopes that early in the disease, my immune system had not crumbled too much and I could still mount a protective response.

The new improved PREVNAR 13 made my arm sore, which I took as a good sign, suggesting some immune response. In contrast, the flu jab a few weeks early was a non event.

That night I felt pretty awful- achy, lightheaded, nauseated, chilled, agitated. I slept little.

The next day, today, I went for my every 8 weeks IVIG. This by the way, may also dampen my immune response to the vaccine, but I wanted to get the immunization as far out as possible from the last boost to my passive immunity with the infusion of IVIG.

It was not that long ago that I was getting IVIG every 2 weeks! My veins are much happier.

I still felt terrible this morning.

Although the news was good with my hemoglobin and platelets (both within normal ranges), despite my stretching out the time between the protective dosing with other peoples' antibodies to prevent me from killing my own platelets as I have done so often in the past with my ITP, I got a surprise with the white blood cells.

My lymphocytes were zero, nada, missing in action, on the automated differential although I did have a normal 0.4 count of atypical lymphs.

My lymphs are my cancer cells. I am happy they aren't around.

But they are also my T cells and presumably some healthy non-clonal B cells. Where are they? I need you guys to fight infections and search and destroy any early secondary cancers. Come back!

Strange, but it gets stranger.

My absolute neutrophil count was a very high 16.7, most consistent with a bacterial infection. These are levels one sees in pneumonia or appendicitis or a kidney infection. Serious stuff.

Occasionally however, very early in the course of a viral infection, the neuts will rise. In the past when I was sick, my lymphs shot way up, not the neuts.

And although I had no fever, my blood pressure was as low as 81/45. It was still low, but better by the time I left the cancer center.

Despite the fact my wife was very sick all last week with multiple specific signs and symptoms, I have had no focal problems, just this general overwhelming malaise.

So is it the prodome of a coming illness? The oncologist who saw me at the infusion center wisely wrote a script for a broad spectrum antibiotic just in case, but said to hold it until it is clear I am actually sick with something infectious. Good counsel.

Or was it all just a weird rection to the PREVNAR?

I slept much of the day, and am starting to feel better, so I am betting on the latter. Us CLL patients have pretty weird immune systems.

More bad news.

On a sadder note, another CLL warrior died this week. Ellen Rhudy was a fighter, very actively battling her disease for years in her own unique way with mostly alternative, non allopathic medications. Over the years, we exchange many emails and a few phone calls as she tried to leverage her comprensive knowledge of different nontraditional therapies with the changing and less toxic CLL treatment landscape. We often disagreed, but we were friends because we shared a common enemy.

CLL plays for keeps. I hate it.

I will miss our exchanges, Ellen. Rest in peace.

Really sad.

More Good Lab News

Our EHR (the electronic chart of all the medical records where I work and get my care) is down again, but before it crashed, I was able to view most of my lab results from 3 days ago.

Remember that I had gone a full six weeks between my lab tests and IVIG infusions to control by ITP, representing the longest period my veins haven't been probed for blood in the last seven years and the longest period ever between immunoglobulin infusions.

And the news was only good.

First the CBC.

For first time in many years, I have two blood counts in a row that showed no anemia. My hemoglobin was a robust 14.4.

My platelets were even better, an amazing 405,000. Although I have had a splenectomy, and they would be expected to be higher than in the reported average, this is still a super result, reinforcing the safety of the move to extend the time between infusions. It wasn't that long ago that I needed treatments every two weeks to keep my platelets in a safe range.

My absolute lymphocytes (ALC) was nice and low at 1.2. I want it low because those are the cells that make up my cancer. A high ALC usually means the leukemia has returned. My ANC (infection fighting neutrophils) was a healthy 6.2.

Blood chemistries showed that my liver and kidneys are doing a superior job of ridding me of any toxins or waste, and my sugar, minerals, and electrolytes are well balanced. Uric acid which often rockets up when taking cyclosporin as I do stayed well below the point when it comes out of solution and can cause the agonies of gout. This last result I particularly attribute to my vegan and nearly completely alcohol free diet.

Even my iron studies, consistently low in the past and likely one of the negative results of my longterm meatless diet, had inched their way into the bottom of the normal range, suggesting that using the cast iron skillet and eating more collard greens and molasses was slowly filling my empty tank.

And to top off the good times, my blood pressure was around 110/60 even with an IV in my arm.

When the computers are back up, I will check my Vitamin D, zinc and IGG levels.

I have grown accustomed to getting good lab results, but I never take them for granted and I am always grateful.

Next week, I am off to Ohio for my 84 day check in with yet another set of CT scans and more lab. On the way there, I am leaving early so that I can stop in the bay area to kvell (Yiddish for to feel proud and happy, especially applicable to one's offspring) over my granddaughters, and on the way home, I will be visiting friends in Missouri.

But that is the only travel planned for all of July! It is great to have some down time at home. Even with my boring labs, I still get tired and need my rest. Except for the fatigue, and the constant background noise about my impaired immunity and a host of other potential but G-d willing never going to happen concerns, my CLL is a non-event.

I believe that after this set of scans, I can go a whole six months between imaging, but not between visits to OSU and Dr. Byrd.  Enough scans already!

Starting late in August, American Airline will offer direct flights from LA to Columbus. It may be almost worth the unpredictable drive up the 405 from Newport Beach to LAX to avoid the stopover in Dallas or Chicago for my next trial visit. That could be nice.

I remain busy with prepping video and news material for the blog. Expect the second part of my ASCO 2013 Wierda interview on prognostic factors to be posted here soon.