Chronic Lymphocytic Leukemia (CLL) Support Group

Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.

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  • I started treatment for CLL on October 26, 2015. Lymph nodes were so swollen in my neck that it was almost even with my ears. After only 3 weeks on ibrutinib, my neck was normal size as well as under my arms and I am sure all over my body.I am wondering if anyone else has been given this treatment, and if so, were there any side effects. The only one that I have had is high white count which...
  • New2CLL

    Newly diagnosed CLL

    As a 53 y/o female, I was recently diagnosed with CLL. My elevated lymphocytes, as with many of you, were detected during routine labs. I was referred to an oncologist/hematologist, who performed his own labs, which confirmed CLL, Stage 0. No lymph node involvement, spleen and liver ok. Currently in "watchful waiting" period. Easier said than done.It's scary news, only to be told to watch...
  • KathyCLL

    Bone Marrow Extraction

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    Newly diagnosed last week. Both my reg. doc and the hematologist have mentioned bone marrow test, which scares me beyond believe. She says it's routine and practically painless.My sister, who's a nurse practitioner, explained to me why I will probably have to have this test at some time in the future.I'd like to hear from anyone who has had to have it- WAS it painless? How long does it take? ...
  • kasara

    CLL and cannabidiol

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    I was recently diagnosed with CLL, Stage 0. A friend with breast cancer has been using cannabidiol (CBD) and feels it has helped her. I have been reading documentation about CBD killing cancer cells. Has anyone here used it for CLL?
  • LTBD7

    No symptoms? Really?

    My next appointment with the oncologist is two weeks from today so I am already getting a bit anxious. I was diagnosed nine months ago...at times it seems like just yesterday. Like many others on this site, I was totally surprised by my diagnosis. I have been seeing my primary care doctor every six months for the last how many years and nothing has ever shown up in my blood work. I have had a...
  • I just started treatment for my CLL 17 deletion with Imbruvica. I was a watch and wait since 2012 and just recently had things start to change. Looking for some friends and advice on how to deal with all the emotions.
  • ty567

    CLL???? help

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    I few months ago during routine blood work for a pre-job screening it was found that I had a low white blood cell count. This was no surprise since I have had low WBC since I was a baby. Still I was sent to my GP to get checked out and she then sent my to a hematologist (because she wasn't comfortable signing the form that stated I was fit to work). The hematologist ran a lot of blood work and...
  • I was diagnosed with stage 1 CLL in April. My oncologist wants me to be tested every three months. Since no treatment will be started until I have other symptoms, I don't see any benefit in repeated testing - maybe just annually. How do others with CLL in the wait and watch stage handle testing? Thanks for your input.
  • I was diagnosed with Chronic Lymphocytic Leukemia (CLL) seven years ago. Even though I was still in the watch and wait stage, I was getting more and more infections requiring frequent doctors visits and even hospitalizations. My off-the -scale blood abnormalities confirmed that I was circling the drain. But now my whole world has changed. I feel good again. No more infections. I have been...
  • The question: Should I retire? I may not be restaurant rich but I can make it the rest of my life without working...I think; but of course I will need to pay for health insurance for five years until medicare kicks in. I am factoring in $250K for out of pocket medical expenses which is nothing these days. I am in very good physical shape for my age and work a blue collar job that pays...
  • deleted_user

    Cll and joint pain

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    has anyone out there begun to experience severe joint pain? I , am beginning to feel like a retired NFL running back! Any Meds that help?
  • My mom (my best friend) was diagnosed with CLL a year ago today. I have spent the last year living in a fog of horror, shock, fear. She has decided not to tell anyone about it with a few exceptions. I really just want to talk to other people who are going through this so that I can be as informed as possible for the years ahead. Hers isn't watch and wait unfortunately and it progressed pretty...
  • iatowmater

    Hello

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    I just signed up for this today, I found the site while looking up more information on CLL. I was officially diagnosed October 6, 2014. I remember the week before it was "official" it was being slapped in the face. Here I was going to the doctor for athletes foot that would not go away with the over the counter sprays. My doctor decided to do a CBC because I had lost so much weight (85#s) I had...
  • Has anyone gotten the vaccine or been advised for or against by their doctor?
  • Hello I am AngeeI was told in August of 2010 I had CLL at first I cried. I really dont want to be sick but now I i think God for what i have cuz it could be a lot worse.Anyway back in 2010 when they told me I had CLL. I went to the emergency room. with my side/back pain. did chemo for a few months and have not had do to it again, but now my side/back has been hurting for over 24 hours and...