newly dx'd

just4kk Member Posts: 2
edited March 2014 in Leukemia #1
Hey, I am newly diagnosed with CLL and the funny thing is I don't feel "sick" but haven't felt well for a long time. My PCP gave me a dx of Chronic Fatigue several months ago, but looking back on it, I think it was CLL all along. This past winter I stayed sick. Started with sinus, then the flu, then bronchitis, then pneumonia, then another round of bronchitis, I noticed that I was feeling bloated all the time, even retaining fluids. The doc gave me lasix 40 mg per day and it still wasn't pulling the water off. I still feel so bloated, can eat just a few bites and am full to the miserable feeling. My PCP says that it will be a long time before I need chemo, but wants to do monthly CBC's....will this tired and run down feeling ever go away, will the bloating in my belly go away? ANYONE??? I am a single mom and right now, I am scared...


  • aprete
    aprete Member Posts: 1
    Hi, it sounds to me that you
    Hi, it sounds to me that you need to see an oncologist as soon as possible. I am not saying your pcp is not good but this is a specialty with so many new treatments. Do you have a major medical center nearby? You can find an oncologist there. Good luck and God bless you.
  • florencia
    florencia Member Posts: 1
    newly diagnosed

    I had breast cancer 8 years ago; at that time I had chemo for the breast cancer and have the BRCA 1 gene.  My father also had the gene and had CLL.  Now my primary care physician tells me my white blood cells are slightly elevated - the last count (it was done 3 times) was 12.76, and the lympocytes were 53.  Apparently this is only slightly above normal, but I sent it to my breast cancer oncologist and he said it could be the early stages of CLL and that I should see a hematologist and they would do other testing to make sure.  Has anyone else had these numbers - they seem awfully low to be CLL, yet my oncologist - a person who I respect at the University of Chicago, a top institution - seems to think that might be it.  Any information would be appreciated.