Questions and Answers Provoked by my Blog on CLL (chronic lymphocytic leukemia)

Here are best answers to some questions I recently received. Please email questions as it is difficult to respond this way. Remember I am not a hematologist, pathologist, or transplanter.

1: Please explain if CD 19 is present on both the normal B Cell and cancerous B cell as stated here, then how can CD 5, CD 19, and CD23 be what is used to diagnose CCL per Dr. Weird in a Patient Power interview? Also, are any of the 3 CD’s mentioned above also present in T Cells? on ASH 2012: Dr. Bill Wierda on CAR-T Therapies and "Off the Shelf" T-Cells

ANSWER: CD5 is usually only found on T cells. Its presence on monoclonal B cells is not expected and thus helps diagnose CLL.

Perhaps this chart will help. The information is gained from flow cytometry. Click on it to see a larger version.

2: Hello Dr. Kauffman, I am four years out from a CLL stem cell transplant. I wondering how long ones immune system is compromised after a transplant? Would I still catch pneumonia really easy? on Dr. Byrd Updating the trial data on ibrutinib for CLL (Chronic lymphocytic Leukemia)

ANSWER: Immune recovery post transplant is slow and complicated and varies from patient to patient and even within each patient themselves. Different immune component may recover at different rates. Suffice it to say, one can remain at increased infection and cancer risk for several years after transplant, but after about two years, much of the high risk period is behind you, that is assuming you are no longer on immunosuppressive drugs for graft versus host disease(GVHD) and you are well recovered. For example, routine vaccines are usually begun between 12 and 24 months post allogeneic stem cell transplant, suggesting that your humoral immune system is fairly robust by that time.

Below is some very basic outline of post transplant care.

3: In looking at the ASCO abstract, information is not provided as to the cause of treatment interruption. An interruption due to a drug complication or cll event may have a very different impact on PFS than a break in care for surgery. Is that data available? 

ANSWER: I wish I had that data too. I do understand that many of the patients were quite sick for multiple reasons and that's why they quit. Patients who go off drug for a week or so for a minor surgery as an example should expect better results.

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.

Bad news

The bad news. There is CLL in the blood again It is not welcome back.

Worse news. It is aggressive, ZAp 70 +, CD 38 +, and 11 q del.

Worst news. Nodes have grown everywhere, the biggest being a conglomerate mass that is 6.4 x 3.4 cm in right mesentery. The word conglomerate is never used in a pleasant contest, is it? When you hear the word conglomerate, you best keep your head low.

Dr. Miklos was right. Nodes jump from 3 cm to 6 cm because they conglomerate. They skip.

The touch of good news. My CLL is still the same old bad boy, Zap 70 +, CD 38 +, and 11 q del. No clonal evolution.

CBC and more lab tomorrow, followed by Rituxamab. Off to the races.

Off to City of Hope now.

The next chapter is being written.

"Good day, Sunshine" The Beatles

I woke up this morning to a fax with the results of the flow cytometry studies and immunophenotyping of my blood test from Monday.

The fact of the fax was in itself good news. Doctors, especially oncologists, don't tend to deliver bad news by fax.  A careful reading confirmed my hopeful suspicions. 

NO CANCER

Because my lymphocyte count is low and only 1% on those are B cells (CLL is a B cell leukemia), there were not many B cells to check out. Nevertheless, those B cells that were examined were polyclonal or normal.  No clonal populations were found.

So as of day 132 post transplant, all is well in my blood stream. No cancer hiding out.

Engraftment studies may be in my hands later this week or next week.

I am most happy.