Chronic Lymphocytic Leukaemia

Hi!  I was diagnosed with CLL at the end of November 2015, age 45, and am finding it hard to come to terms with this.  I would be interested to hear from anyone else with CLL.  I am a mum of two young children and am scared to death.

Parents
  • Hi EmeliaWS, my husband was diagnosed stage A on 10.11.20 so very fresh for us.  Can you tell me how you are now and how do we move on?  X

  • Hi All , I am new to this forum so here goes.  I was diagnosed with CLL 16 years ago , I had no idea I had anything wrong with me ( no symptoms) this was just picked up on a routine blood test . At first I had blood tests every 3 months, then every 6 now every year just to keep check on my blood cells . Nothing has changed in all this time . I was diagnosed with grade 3 breast cancer in 2018 and had chemo and Radiotheraphy but all this Never affected the CLL , so hopefully it will stay stable. I hope this reassures you if you are worrying.  Take care. 

Reply
  • Hi All , I am new to this forum so here goes.  I was diagnosed with CLL 16 years ago , I had no idea I had anything wrong with me ( no symptoms) this was just picked up on a routine blood test . At first I had blood tests every 3 months, then every 6 now every year just to keep check on my blood cells . Nothing has changed in all this time . I was diagnosed with grade 3 breast cancer in 2018 and had chemo and Radiotheraphy but all this Never affected the CLL , so hopefully it will stay stable. I hope this reassures you if you are worrying.  Take care. 

Children
  • Hi there, not sure if you are still active here as it's been a while. 

    I was just wondering what level your lymphoytes were at diagnosis? 

    Mine have really been a rollercoaster of up and down for 9 years  

    3'300 

    then up 4'900

    then down 4'200 

    during 2021 they were between 4'200 and 4'600

    The during an infection I saw 8'900 all of those little white cells were up.

    at present they are at 5'000

    I have not been diagnosed, but, I am alarmingly confused as to how I have not been. 

    I am certain the normal highest is 4'000

    So my question is what is the count to be dignosed and for how long is it monitored. 

    I'm really unhealthy, heavy, type 2 diebetic and all the lovely things that go along with being "obese" as my DR tells me. Oh she is a lovely lady. 

     

    Thanks in advance