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.

0 Online
  • normas64

    Imbruvica (ibrutinib) Treatment for CLL

    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...
  • TooYoung4This

    Newly Diagnosed...too young!

    Hi I am 35 years old and was recently diagnosed. All of the materials I have read speak of diagnose at 55+. Are there any others who fall outside of teh "norm"  in this group? Any tips? 
  • zip2me

    New to board

    Hi. I was diagnosed with CLL in July after having a bad routine blood test done. I am on a wait and see, just went to Dr yesterday and he says all blood work looks good, as good as it can I guess. I just want to know if this ever gets easier and how you are suppose to deal with this. I also have hypothyriodism and had a brain aneurysm rupture in 2007. Really feeling like what's next. Everyone but...
  • stormspotter

    New to the group...

    I am a 55-year-old male, and was diagnosed with stage 0 CLL in April of this year. I learned that I had this disease as a result of bloodwork done during a routine doctor's visit. I had no idea that I even had this, though I was feeling a bit run down and fatigued at the doctor's office. I was just chalking that up to getting older. At any rate, the doctor's office called three days after the...
  • 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...
  • jeaniepeenie

    New to this group

    I am waiting for results of blood work to confirm that I have CLL. I just turned 61 last week, female, a runner, and go to the gym several times a week. That is why I am so shocked at what the hematologist is postive I have. I am never sick! I am having a hard time wrapping my head around this. I am seeing that there are other stage 0 people on here who have not needed treatment. I discovered...
  • AOGroups

    Research on CLL

    Market Research Company is conducting 1-Hour Telephone/Web Interviews with CLL patients.  Share your story.  Stipend/Honorarium  Offered: $300.00 for your valued time.  We will be conducting these Interviews Thursday, September 22, 2016 – Monday, September 26, 2016.  Email: O:516.208.8448 M: (646) 580-9129
  • 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 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...
  • GrannyB

    Still Working

    I an 59 years young and have had Stage 0 CLL for a year now. I am really fatigued and find it difficult to cope with stresses. Has anyone else experienced this? I thought about quitting work - has anyone done that? For those of you with Stage 1 or higher, how long were you in Stage 0 before it progressed?Any info is appreciated.
  • dsv

    new diagnosis

    I am 58 and was diagnosed from a routine doctors visit but now I know there is an expalination for over whelming fatigue bruises everywhere and 3 upper resp infections in 6 months where as before I was never sick. I am getting bloating in my abdoemn and pain in my l side so it sounds like my spleen is involved
  • KathyCLL

    Bone Marrow Extraction

    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

    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?
  • rosesis

    New to the site, looking for support

    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

    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...
  • stevedanen

    Are regular check ups required?

    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.