Chronic Lymphocytic Leukemia (CLL) Support Group

Dear Jbev79,
You sound just like me when I was diagnosed in June 2008. It took me amlost a year to be where I am right now-accepting CLL and sleeping at night and not being sad, angry, afraid. One of the best things I did was join the CLL forum and the CLL Christian friends forum-loaded with info. and lot's of feedback with people who have a lot of knowledge and experience. Also, have answers from docs who are CLL experts on these sites. I was 38 and was diagnosed from a routine physical. Never had a physical and never get sick. I am a gym rat and a runner. Decided that since all of my friends got annual physicals...what the heck?? Hmmmm....and then they found CLL. I did research on the computer re: CLL for 2-3 hours a day for about 9 months, ate a raw foodie diet for 6 months, did tons of yoga, pilates and some meditation. I, like you went in and my first CBC showed 16,000 and the next one was 21,000 because I was freaking out. Stress does make the WBC go up. Then when I calmed down, it went back to 18,000 and the last one was 16,500 in May 2009. I go next week for my 6 month oncologist appt. We will see what happens then. This is what I say about treatment with Stage 0 CLL-NO! NO! NO!. Absolutelty NOT! You do not want to put that stuff in your body while you are asymptomatic. I wondered the same thing. I had 6 friends diagnosed with cancer within 16 months of my being diagnosed and all were receiving treatments-made me mad! After all of my research, I have learned that we are in a great place with NOT needing treatment. Let's face it, it is a poison and the longer we can avoid treatment, then the better off we are. Treatments are for prolonging/improving our lives to fight against the cancer, but on the flip side, it does reduce or lifespan, too. Catch 22, huh?? Do all of the research you can do to come to terms with your CLL and as you read stories, you will probably realize that a Stage 0 is a lot better than a lot of CLLers have. You are not alone and the diagnoses are not for the white, male 65 years and older anymore. When you are diagnosed young at Sage 0, is almost becomes a monkey on your back and there is nothing you can do but lock it up in a box and revisit if and when you need to. Being diagnosed has made me a better person all around. I don't do things that I really don't want to do anymore, I have more yoga in my life, eat even better than I did before (and we already ate crazy healthy) and I have more patience. Have you had a FISH test, ZAP 70, or any other tests yet?? Are you seeing an oncologist in hematology?? Where do you stand medically?? When do you go back next? Take a deep breath and learn all you can so IF your CLL does progres, you will not be taken aback again like we are all at diagnosis time. Just know that there are new treatments in the works and if you donate money-make sure you throw some at CLL research!
Take care..you have lots of support out there!

Dear Jbev79, Thanks for sharing your story. I've had cll for 5 1/2 years now. I had just turned 40 and like you I found out while having some routine work done. I know everyone's story is different, but I want you to know that in the 5 1/2 years I've not needed any treatment at all and my white blood cell count as of last Monday was 266K! Yes, that is very high but all my other counts are relatively normal. I am married, have two children 19 and 16. I work and have a very full life. When I was first diagnosed I wondered if I would see my kids graduate from high school, etc. I'm happy to report I watched my son walk last June and dropped him off at college just a few weeks ago. Again, I know this is not everyone's experience, but I want to encourage you that it is possible. I don't do anything special except take green tea extracts. I really don't know if it has helped or not, but I'm pretty sure it hasn't hurt. The one thing I've gained is perspective. I appreciate everything and everyone around me. I thank God for each day and all that it brings - good or bad. God bless you as you walk this road. Trudi

Hi Jbev
I am 43 2 little boys that havent even started school. i was diagnosed in may this year after being in hospital for something unrelated..only symptom was lymph nodes up on my neck. I am also in stage 0 and my white cell count has gone from 12 (just out of normal range) back to 9 (within normal range) my lymphocytes are just out of range. I feel prefectly normal apart from a little niggling spleen pain. My brother is also a naturaopath is treating me with herbs. from memory it is called red clover and is supposed to stop the cell division of abnormal cells...we'll see..so far so good. I have just found out I have 5 other family members with Leukaemia. My cousin in Queensland (Australia) was the yougest person to be diagnosed with CLL 10 years ago..still requires no treatment and doing fine..I have come a long way with coping with the diagnosis...it only happens to "other people" hey!...still, I have a deep faith in God and I do believe that prayer and or meditation is very very effective....Good luck and God bless

I am 44 and a 2 year watch and wait CLL patient. My blood levels run around 80,000 and I have some enlarged lymph nodes so that would put me in Stage I. I to am having a hard time living with this no treatment philosophy but everything I've read says that it is better not to treat in the early stages.