Terry Evans Discusses his Evolution as a CLL Patient and Advocate

[bkoffman]

It has been incredibly busy since I returned stateside at LAX late last Monday after leaving Nairobi on Sunday. Between the jet lag and catching up with work and upcoming activities for the CLL Society, I’m in desperate need of sleep!

But I have some very good news. My lab tests done the morning after I landed that had shown an ominous left shift signaling a significant infection or the start of CML or worse has disappeared as quickly as it came. My ALC is back around its sleepy normal level of about 2 and I have no immature cells that should be in my marrow hanging out in by peripheral blood.

Once again, under reacting and watching the trend has been the motto to live by. The middle way.

Last January, Terry Evans, long-term CLL patient, and I traveled to New Jersey to tape an interview about his CLL journey starting out as a naïve patient and the experiences that led him to understand the importance of having a CLL expert on his team, and the many factors to consider if you are considering a clinical trial. We worked on this project in partnership with Haymarket Education. You can watch the video here. cllsociety.org/2016/08/disc...

[Peggy4]

I watched this last night, very good. I really enjoy listening to 'real' people talk about their CLL journey. As yet, I'm a novice (and hope to be for some time yet!) but I really felt that I could identify with him.

Thank you Brian.

Peggy

[bkoffman CLL CURE Hero in reply to Peggy4]

Thanks

[Justasheet1 in reply to bkoffman]

Doc,

I echo Peggy's words. Thank Terry for us.

I'm also excited for your good labs. I'm turning into a cliché machine but you live your life in a way I admire. You feed our knowledge and still go on Safaris.

Jeff

So for my latest cliché which you epitomize:

"Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin."

― Mother Teresa

[Dpop]

Question........in your post you mention immature cells that should be in your bone marrow. What is the significance if someone did? By looking at my readings that is what I have for the first time although it is only my third blood test.

[bkoffman CLL CURE Hero in reply to Dpop]

It usually means some type of stress such as infection where the bone marrow is pushing out cells early. It also can be a sign of cancer if it is persistent and there are climbing numbers, usually much much higher than a few percent.

[Dpop in reply to bkoffman]

Thank -you

[cllady01 Former Volunteer]

Thank you for the video discussion Dr. Koffman. I have not had any treatment (diagnosed in 2001and have good prognosis indications as of July, 2015). My ONCO/Hemo has not discussed any of the profile he did at that time.

This discussion has settled the fact that I need to call to set up a visit to a specialist. (The smart people on here have been telling all of us to do so--it isn't as though I haven't been told--just being as indolent as my CLL has been, I guess.)

The following is of concern to me after hearing your statement regarding immature cells:

My flow cytometry done in July 2015 has the following: Abnormal B cells of predominantly small size, account for approximately 100.0% B Cells and 90.5% total WBC.

Is this what you are talking about re: immature B Cells from bone marrow being in blood?

[bkoffman CLL CURE Hero in reply to cllady01]

No. The immature cells in a left shift are myeloid cells that will turn into granulocytes (primarily neutrophils) found in the peripheral blood. The precursor cells are supposed to be only found in the marrow. They have nothing to do with the lymphocytes that are the source of our cancer.

[cllady01 Former Volunteer in reply to bkoffman]

Many thanks. My onco/hemo will talk to me at my next appointment or, as I have told his nurse, I will need to go elsewhere. There is one specialist in my town. I am going to call him for an appointment tomorrow--knowing it will most likely not be this month that I can see him.

You are such a gift to us with your knowledge and caring nature. May your good news continue to be so!