My CLL diagnosis in July 2013

I will be 65 years old in January 2014 and have had what I thought was extreme fatigue for a number of years. A year ago I was diagnosed with Type 2 Diabetes - just like my daddy and all four of my siblings, but my fatigue went back further. Thought it was just old age.

Almost every time I went to the doctor for the past few years, I told her I just felt so tired all the time, even though my A1c readings were low 6's. After trying to mow the grass in early June of this year, I told the doctor I could only walk a few feet with the mower and then it was like I could not suck in enough breath to breathe. I always ate before I did yardwork. I questioned diabetics I knew if they had trouble breathing with little exertion and they said they did not. My doctor even did an EKG to check my heart, which came back normal.

Then I had labs done in late June 2013 and my WBC was 19.8 - high just like it had been the last few years. I had meant to call the year before to see what was going on but then got busy and forgot about it, assuming that if anything needed to be done the doctor would let me know. This year when it came back at 19.8, I showed my labs to my renal Dietitian daughter and she asked me when I was going to call and find out what was going on. I looked at my list of providers to see my choices of hematologists and found the one that had treated my mother's mantle cell lymphoma the week before she died and decided I would go to him to see what was going on since my doctor did not seemed concerned.

Then I decided before I made an appointment with him, I would call my doctor to see why she was not concerned that my WBC was twice as high as it should be. Her answer to me was that my WBC "had always been high" - I was furious! She did say she was going to refer me to a hematologist and did I have a preference. I told her who I wanted to go see. Later that day her office called and I went in the next day to have a CBC - my lymphocytes were 73.9% (normal high was 55%) and my WBC was still about 20.

The next week when I saw the hematologist, labs were drawn before I saw him and my WBC was 30.2. He told me I probably had CLL but wanted to have a flow cytometry done to confirm. A week later he called to confirm his initial CLL diagnosis - stage 0..

I went back and looked at copies of prior labs. In 2004, my WBC was normal at 4.8 but my lymphocyte count was high - at 50.5 (normal at up to 40). I wonder if that was the start of my CLL. My fatigue went back that far. In 2008, my WBC was 7.9 and my lymphocyte reading was 55.5% (normal at up to 40).

No more CBCs until July of this year, but other WBCs of:

10/10/11: 14.9

06/20/11: 20.5

06/19/12: 18.5

06/24/13: 19.8

07/10/13: 20.0

07/22/13: 30.2.

I'm now going in every three months so my hematologist can establish a baseline. I'm negative for CD38 - which is good, and I plan to ask him on my next visit about my Zap70 reading.

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8 Replies

  • Welcome to the group babs72116

    I think there is a problem with activity and news feeds today picking up people posts? Sorry to read your diagnosis but glad you have found a few of us here. I am hopeful that this response will be picked up in the activity feed to let others know you are here.

    While following your story i noticed you use percentage of lymphocytes as a way of reading your lymphocytes. You ought to be reading the ALC the absolute lymphocyte count as CLL people may continue with day to day life with very high percentage figures in the 90s

    These are earlier discussion about this here in the group that may be helpful..

    How high can you go? (And what does it matter?)

    Why we need to track the absolute lymphocyte count (ALC) not white blood cell count (WBC)

    Absolute Lymohpcyte Count (ALC) and other metrics


  • Thank you, Nick, for your response and links.

    Since I am new to CLL, I'm trying to read and understand as much about CLL as I can, even though so much of it is over my head - lol.

    Again, thank you for your help!

  • The follow is an excellent resource to patients in the U.S.

  • Thank you

  • Hello Babs

    I just wanted to add my welcome to you; I am glad that you have found us.

    It seems to have taken a long time for you to get a diagnosis but at least you have it now and appear to be at an early stage of CLL.

    You will very likely have a lot of time to get to understand this cancer and there are some very knowledgeable and helpful people here, so please ask about anything you are not sure about.

    There is also much to read in the archives and I see that you have already been given some reading material by both Nick and Chris - that will keep you busy for a while!

    You are not alone when it comes to the awful Fatigue, as very many of us also suffer hugely with it.

    You are not alone with the CLL either now; we are all here to support each other, so please feel able to talk about anything you want.

    Take care

    sparkler x

  • Thank you

  • I'm repeating a post and message I have sent numerous times in the past.

    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood diseases that added to my symptoms. In 2010 before treatment we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help. I also had Whooping Cough (Pertussis) I was treated in 2010 with Rituxan monotherapy and the fatigue problems disappeared but the cough took months for the symptoms to slowly subside.

    In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed me entirely.

    So is it CLL and an opportunistic infection?

    Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue.

    Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your fatigue, you could have a combination with a virus, bacteria or fungus contributing to the fatigue.


  • Thank you for sharing. You have had a very hard time with this - I am so sorry you are suffering so much. I go back to my hematologist the first part of December and will check with him about the HHV viruses.

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