Friday, September 1, 2023

The Faces of Blood Cancer - CLL

Not only is today the start of blood cancer awareness month but it is also World CLL Awareness Day. 

I am pleased to introduce you to Dr. Brian Koffman. Not only is he a Dr. but he was diagnosed with Chronic Lymphocytic Leukemia (CLL) in 2005. 

He has a widely followed BLOG and is the co-founder and chief medical director of the CLL Society.

Let's learn a bit more about his personal experience with CLL.

How did you find out you were sick? What led to your diagnosis?

I noticed when I was showering or brushing my hair that I had some lumps at the back of my neck. I wasn't too concerned as I thought they were just cysts, but they didn't go away. Months later I ordered some bloodwork on myself.  

What were your first thoughts when diagnosed?

The next big shock, after my diagnosis, was to find out my cancer was incurable and at the time there were limited treatments available to even prolong my life. Further more, it was incredibly surprising to learn the default approach for many patients diagnosed with CLL whose disease is not aggressive was - and still is - to "watch and wait" instead of beginning treatment immediately. 

What did your treatment consist of?

A year after my diagnosis I was in a world of trouble with single digit platelets from a rare and in my case, difficult to treat autoimmune complication (immune thrombocytopenic purpura (IPT). That resulted in multiple hospitalizations, an urgent splenectomy, and massive internal bleeding. IPT tried to kill me several times, came close, and I know how lucky I am to be alive.   

The IPT and the fear of it raging again drove my decision to get a first remission hematopoietic stem cell transplant (HSCT or bone marrow transplant) that quickly failed. My subsequent jump into two phase 1 clinical trials saved my life. 

Both gave me years of deep and wonderful remissions. My fear of recurrent IPT is my primary driver to treat it early again. After beating the odds with a 5 1/2  year remission with CAR-T, my CLL is demanding my attention again.

What is your current medical status?

I have just recently started into a new clinical trial. Let me start by saying this is my personal decision, relevant to my circumstances, and not likely applicable to anyone else.

In most cases, the decision about when to treat CLL is usually just that, a decision. iwCLL has clear guidelines for when treatment is indicated.

There are advantages to staring some therapies earlier when the disease burden is low. With some therapies, this can mean both higher efficacy and lower risk of adverse events when the cancer is being rapidly killed, especially early in the treatment.

Some treatment options, especially those in trials, may have narrow windows of accessibility, and when a slot is available, it may force a quicker move than planned.

But the real impetus behind my decision to treat now is that I am not waiting for my blood counts to fall. I know that when my platelets fall, they fall off a cliff. In the past, my lymphocyte counts were only slightly elevated when my platelet count fell dangerously low. My other blood cell counts were all perfectly normal at the time. My IPT doesn't send me a notice that it's in its way.

Today my absolute lymphocyte count is only 3.8, barely above normal, and only about 1/4 of those are monoclonal chronic lymphocytic leukemia cells. This is a very low number, but I know it's doubling every 2-3 months for a long time with no signs of slowing down because I have been following it closely with testing.

I am not waiting. MY CLL is coming back. It's not if I'll need therapy; it's when. With my CLL's return, it carries the risk of reawakening my IPT.

Based on your own experience, what advice would you give others that were diagnosed with the same type of blood cancer? 

Waiting and postponing therapy is often the very best option. Everyone's case is unique. The only universal is that nearly always the timing of when to start treatment for CLL should be carefully considered shared medical decision between patient and the healthcare provider.

Stay strong; we are all in this together.

*Please note that as of this posting Brian is currently undergoing treatment again in a clinical trial and is not feeling well. The information above was taken, with permission, from his personal blog. To learn more please follow along on his blog.

No comments:

Post a Comment