Sunday, April 20, 2014

My Chronic Lymphocytic Leukemia (CLL): More Good News


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.

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Anonymous Anonymous said...

News just gets better and better.
Thanks for posting .
Michael and Jan Dublin

April 21, 2014 at 3:26 AM  
Anonymous Anonymous said...

Wow. Really great news Brian. For those of us new to CLL, what is a good way to approximate the "good" T-cell count (CD4/CD8) you mentioned? For example, say that my WBC is 12.3 and my lymphs are 8.9 (72%) and ANC is 2.8. What is the good cell count (CD4/CD8)? Thanks again, and keep on informing us of your progress.

April 21, 2014 at 5:19 AM  
Anonymous Anonymous said...

Loved reading this post Brian! So glad ibu is tamping down... Are you taking an mAb or is this the result without, and if so, now that ibu is approved can you start taking a mAb? I know you know this but for your readers, the mAbs like obinituzumab are able to kill off CLL cells once they are circulating in the blood and out of nodes/marrow.

How about your marrow? Your near clean slate on CLL great example of why I hope they get combo pathway inhibitors trialed. So close, how great would it be if adding abt199 or idelalisib or both took you from 28 to 0! No proof that would be the result, but is very plausible.

April 21, 2014 at 6:34 AM  
Anonymous Anonymous said...

Great news Brian. Thanks for posting.

April 21, 2014 at 7:20 AM  
Blogger Unknown said...

Hi Brian,

Since it has taken me 31 months to achieve a CR in the blood and nodes, coupled with your latest report, indicates that we do not know how good Ibru really is nor how long it will take to clear out our cancer to a maximum level. I will be getting a BMB this Monday and although I am not exactly looking forward to the experience I am very curious as to the result which may indicate that I have achieved a CR in the all important marrow.

Both our cases as well as others should provide a great deal of optimism for patients who are lucky enough to access Ibru.


April 21, 2014 at 7:27 AM  
Anonymous Anonymous said...

Wow, this is such exciting news to hear. I am so glad to hear your good news and how well Ibrutinib is working for you, I pray it will continue to do so. Thank you for your encouragement.

April 21, 2014 at 12:39 PM  
Blogger Brian Koffman said...

CD4/CD8 ratio is the ratio of two type of T cells and is a rough marker of one aspect of immunity, famously impaired with HIV+ patients, but also can be messed up in other disease such as CLL that effect the immunity. A normal CBC gives no information on it. You need to do an expensive flow cytometry to get that info. My results were part of my trial.

April 21, 2014 at 7:14 PM  
Blogger Unknown said...

Great news! Really pleased for you.

April 22, 2014 at 2:06 AM  
Blogger Jeffrey Zuckerman said...

Great news Doc. You are an inspiration and an educator. A rare combination these days.

April 22, 2014 at 5:12 PM  
Anonymous Debbie Young said...

Brian, great news here! Funny story, went for my 7 yr onc visit.. he casually asks if he ever told me I have a 13q deletion ( he did not) and tells me it that is a marker that can mean no treatment.. etc. Thanks Doc, 7 years late! Good work Brian, you are always an inspiration! Debbie

May 2, 2014 at 10:09 AM  

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