Newcomer-Diagnosed with CLL July 2014

Thank you for this site. I've been reading some of the posts about night sweats and they all made me feel better.

My diagnosis began at a community health fair. A friend and I decided we would have our blood drawn because "the price was right". I received a call a week later asking me to call my primary doctor about my blood results. I didn't think much about it and forgot, but had back issues a few weeks later and went to the doctor after work. I was told that my white blood count was high and they wanted me to see an oncologist. My thought at the time..."Not me..."

I took my daughter with me and we were told I had CLL.

The thing I've noticed the most? I'm way more tired than normal, I just need more rest. Also, if I get sick, it's way worse than it used to be before CLL.

7 Replies

  • Hi Wendy and welcome although it is understandable that you would rather not be welcomed into this community.

    It is amazing how many people get diagnosed from a routine blood test. I myself was given a blood test to check my general blood sugar and cholesterol and it came back with a CLL diagnosis. and yes while the docs don't recognise it as a symptom of CLL the tiredness is genuinely an issue for me too.

    You are in the right place here amongst people who understand your condition and the emotional roller coaster it can be, there are no daft questions in here just have a look around and learn, there are a lot of people here who can give sound advice based on experience and knowledge so ask away.

    Take care and may all your bloods be stable ones


  • Welcome Wendy. I echo Pitbull's comments as well. Tired, tired, tired. I putter around the house when I have energy, rest when I don't. I don't find it a matter of pacing myself, but rather a, when you have energy, use it, when you don't, don't fight it, rest. Hang in.

  • I found that counter intuitively making myself take exercise when I just feel like curling up, gives me energy.

    It doesn't have to be excessive exercise but just enough to get your blood pumping round. Also taking vitamin D3 in oil capsules helps with the tiredness and drinking lots of water to flush through any infections you might pick up.

  • he regular readers here and on other CLL sites know that any mention of fatigue gets a post from me about testing for unusual childhood diseases, so here it is again.

    "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."

    We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on fatigue: mutated-unmuated.blogspot.c...

    Both times my CLL progressed I got severe fatigue and a reactivation of a childhood disease 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. Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

    I also had Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time. When I was treated in 2010 with Rituxan monotherapy the fatigue problems decreased dramatically but the cough took months for the symptoms to slowly subside and the coughing disturbed my sleep some nights adding back some fatigue.

    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. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

    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.

    And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

    Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

    Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

  • Thanks for welcoming me into the group, and especially for the words of wisdom. Both are much appreciated.

  • Hi Wendy...

    I suggest you start your journey with this publication... note that they offer all kinds of support...

    It has been reviewed by a leading CLL doctor at OSU, Dr. Byrd

    I'm 17 year CLL patient advocate... above all you are you and we are all different... enjoy life...


  • Hi Wendy,

    Just wanted to add my welcome to you (though of course you'd rather not be here at all).

    LIke you, I find that the tiredness CLL brings is the worst thing... Over the years of having CLL (I was diagnosed about 8 years ago), I've sort of adjusted to it - and don't expect so much of myself. Then I get surprised and grateful when I do sometimes get bursts of energy. CLL is very unpredictable... Sometimes for no apparent reason I am exceptionally tired, but at other times i feel almost like my old self for a while.

    I just looked at the link Chris posted above, and want to add to his recommendation... It is VERY good... I read it some time ago, but now it seems to be even better. All the latest info, and in plain English (very necessary for folk like me).

    Wishing you all the best on your CLL journey...

    Paula (in England)

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