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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  • Songirl23

    Newly diagnosed with CLL

    6
    Hi all. I'm new here. I'm newly diagnosed with CLL. Well, my primary will tell me the full news tom. 5 years ago, I had pain in my right foot.Turns out it was a bone tumor. After all is said and done, I now have had 2 bone tumors, 3 external fixators, bone transplant, osteomyelitis, 12 ops and am now a below the knee amputee. The ball was dropped on pathology so I'll never know what kind of...
  • SG70

    CBD/THC

    0
    I was diagnosed with CLL in 2011. My lymphocyte levels have ranged from 3.9 to as high as 7. I have just started taking CBD/THC and wondering if there are others that have tried this treatment. I am currently on observation only, but would love to see if this regimen has helped others with CLL.
  • ChildofGod

    Ibrutinib (Imbruvica)

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    Hello I am actually new to the group. I am wondering if anyone has been or is currently on ibutinib (imruvica) ? 
  • Palisades

    Stage 0 CLL symptoms

    1
    Hi, I am a 63 year old female, who was diagnosed with CLL, stage 0, in January, 2016. Ironically my mother, was also diagnosed with CLL at the same age. She is no longer with us. I am fatigued and sometimes have night sweats, otherwise I am in fairly good shape. My lymph nodes are not enlarged. I thought at stage 0 that I would not have any symptoms so am surprised by the fatigue, not really...
  • hdk27

    support groups for CLL

    4
    I am looking for a face-to-face support group for CLL in the Long Island, NY- NYC area- please let me know if you are aware of any in the area or if you live in the area and would be interested in forming one with me. The only ones I am aware of include "caregivers." While they are helpful, I would love to speak freely about my fears without upsetting or worrying my husband anymore than I...
  • Tobkay

    Getting close to chemo

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    My name is Tiffany. I was diagnosed with CLL at age 46. I have been on watch and wait for 2 years. My numbers have jumped up quickly this last blood test and now I will be getting blood work in a month to see if I need to start chemo. Can anyone tell me what the chemo is like. Will I be able to work? I am raising a 5 year old-I am a single parent. Thanks for any input! God bless!
  • melissa71

    Melissa71

    5
    I was diagnosed Cll at age 44 about 9 months ago, I was watch and wait, my WBC is 35,000! I have been feeling really bad about last 2 weeks severe headaches , body aches,walking issues and knee and leg and hip pain, could this have any thing to do will my Cll getting worse or progressing??
  • rutkab

    Treatment for CLL

    4
    I had treatment for CLL from October 2016 to January 2017.  I was given gazyva (antibody) and took Leukeran chemo pills.  The treatment was not bad.  Did not lose my hair at all.  The only complaint I really had is sore, aching joints.  I was able to live a pretty normal life with the treatment.  My white count is down to 5.4 and I have had my first normal blood count in 10 years.  Hope...
  • nav

    imbruvica

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    I am 64yr old and was diagnosed with CLL 8 years ago. So far we just watched and waited, now my wbc count has exceeded 200 so my Dr put me on imruvica. Within 9 days my lymph nodes went down and my spleen shrank, this was great. However, I developed a rash on my arms and legs, and some blood under my skin. I stopped the drug for a few days and now am back on it at 1 pill a day. Hoping I tolerate...
  • Acc

    Just Started Ibrutinib Today

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    Macc here, a 58 year old very healty and active male in Colorado, have been "watching and waiting" CLL for 15 months, white blood cell count up above 200,000 so started the Ibrutinib today.  Looking forward to learning from participants in this forum. 
  • vmsamom

    Just diagnosed

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    I am a 38 year old female that was recently diagnosed with CLL.  I have two small children so I am still processing everything.  We go next week to go through the next steps and potential treatment.  What can I expect?  
  • 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...
  • TeamMowerMan

    Symptoms and W & W over

    1
    Hello, I joined this support group for support for my husband and myself, his caretaker. He is 41 years old and was diagnosed last October with Stage II CLL. He started with one large lymphoma under his armpit and then after scans found out they were throughout his body along his lymphatic system, everywhere. We have been to Dana Farber Cancer Institute in Boston, MA and our local oncologist...
  • Timmy

    62, male, CLL, auto immune anemia, chemo patient

    1
    Am posting for my husband who was diagnosed last March 2016 with CLL and Auto Immune Hemolytic Anemia.  He went thru 18 rounds of chemo,  3 days each month, for 6 months.  Last chemo was Aug. 2016.  Has been good off and on.  Pneumonia Nov. 2016.  He's had a few good days.  Blood work looking excellent, but is fighting some sort of infection or virus.  Fever today and yesterday.  Feeling...
  • ty567

    CLL???? help

    3
    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...