Chronic Lymphocytic Leukemia (CLL) Support Group

Hi, and welcome. Getting a dx of leukemia is stress enough without having to raise twins, (double trouoble?) I hope you are on w.w. forever.

Welcome you are not alone I was diagnosed with cll last year and I am still on ww so you could be there for a long time.

Hello
Did the Dr tell you that you are really on the young side for this particular kind of leukemia?? I was dx about 9 mos ago and have stayed at about 20 to 24 thousand (B cell) Also B cell is the least aggressive. The fatigue is the big thing with me--Hang in there

You know that we may be on a watch and wait for the rest of our life and end up dying of something totally unrelated. I have added another W--worry--so it is the wsait watch and worry disease. I know a lady that has been at 20thou for 25 yrs

I DO know that I am very young to be diagnosed for this disease. Should have seen the sense of urgency in the onc. office to get me tested. Crazy! I have had all of the tests (marrow biopsy, zap 70, cd 30, etc.) and went to Duke for a second opinion. Yup-they all agreed over there that I have b-cell CLL at a stage 0. I allowed myself to worry quite a bit and reminded myself that the stress was going to be what kills me. I am educating myself of this nasty cancer and living my life to the fullest. I have a great life, great husband and healthy twins. Also, I am very athletic and tend to tire more than I used to, so I take it as a sign to slow down where in the past I felt guilty for resting since I am a stay at home mom. I always felt like I was supposed to be busy. I am living everyday by the mantra Watch and Live! I hope all of you have a great day and live it to the fullest!

Hi
Because you are so young, time is certainly on your side. They are doing SO much research with this disease and also because you have the B cell which is the less aggressive. A while back my onocologist told me if she was given the choice between this and diabetes she would choose the CLL hands down. I, too, find the fatigue is the hardest to deal with

Hi i am new too and have just been diagnosed in july with CLL/SLL..grade?...unsure but Whitle cell count quite low and are watchful waiting also. I understand how you might feel. i too and am younger woman with 2 little boys that havent even started school. I have managed to regain a sence of purpose in my life after the initial shock and am now enjoying life again. God carry's my burden for me each day..there is much power in prayer. doesnt mean that I'm not scared stupid though. I am trying to get on with life and not let it confuse or consume me. I like what i read here and love to hear about the longevity of some and the hope most have. I just think...It could be worse, we are still here now~! all the best to you

Hi! I could not agreemore-we are here now!If my CLL never progresses, I wiill believe that having CLL is not as devastating as I had originally thought. I am a better person for it and have a whole new leash on life. Am more inclined to do things that I have always wanted to do and have a lot of patience, where as before I had NONE! I hope you are well! One of the best things I did was join the CLL forum and learned all that I could. That is where I learned that things could be much worse for me. Many peopel out there would love to be at a stage 0 with a WBC of 16.0 (May '09). What is your diagnosis-stage? WBC? Take care and enjoy your little ones. Mine are going into 4th grade in one week and it is a total blast!

my wbc last time was 12.something. I cant remeber the lymphocyte count. i know that both were JUST out of range. I have been feeling really well and happy except i have recently found some lumps under my arms and have spiralled back down again. I had a blood test yesterday and see my heotologist next week. he didnt seem to think it was urgent to see him sooner so I am taking that as a good thing?...oh the joys!!

That same thing happened to me. It freaked me out! They originally felt nodes on my groin and one of my underarms. THEN, I felt one under the other arm. He explained that those who are on the thinner side (and from the looks of your pic-you are thin) are going to feel them easily and once they enlarge, they do not go down. Kind of like a balloon. My WBC has gone up to 21,000 and last May, it was 16,000. I go back in October for my 6 month check up. Please keep me posted on your results. I agree with you about not sounding bad if he is no hurry to see you. Good luck and enjoy your boys!!