I am a little concerned about my recent diagnosis and the lack of concern/treatment from the local surgery. In January I had elevated lymphocytes in a blood test and the local doctor dismissed it and said that I was probably fighting off an infection. Then in August I was suffering from a few odd bone aches and joint aches and I was concerend I had rheumatoid arthritis. Another blood test showed my lymphocites were further elevated and I had smear cells and so I was diagnosed with Chronic lymphocytic leukaemia (CLL). I was refered to the Haematology dept at the hospital who wrote back and said not to worry or do anything until my lymphocyte count was above 10 (it was 5.4). I had to push the doctors to get a regular 3 monthly blood test and the latest shows my lymphocyte count has gone up to 5.9. But I am having to chase the doctors and there seems to be no help other than regular blood tests that I have to book. Is this normal and should there be something else I should do??
Hi there,
Any diagnosis of a blood cancer is going to be shocking and probably frightening, but to reassure you, 5.9 is a very very low count for Chronic lymphocytic leukaemia (CLL). I believe that 10 is the number when people with the condition are automatically enrolled into a monitoring programme. I’ve heard of people going up to 200,000 and not needing treatment. Treatment is based on a reading of all the components of your blood (platelets etc) not just the lymphocyte number. I have Chronic lymphocytic leukaemia (CLL) and was diagnosed at 13 last year. It was picked up when I had what they thought was a virus, I was very very unwell for months and ended up in A&E. I had a series of blood tests over about three months and got my Chronic lymphocytic leukaemia (CLL) diagnosis last November. I presume it’s gone up since then. Am on watch and wait and no treatment is planned or wanted at this point. I have six monthly blood tests at the GPs and these are sent to a local hospital, the numbers they find will be monitored. Am fine with that. I do have some level of fatigue and get painful/heavy legs sometimes so have taken early retirement due to this, I feel very unreliable! Have just turned 60.
Hope this helps a little!
Lee
@Cyclobob Any diagnosis takes some getting used to but particularly if it has the word Leukemia in its name. It’s always a shock and a worry. My father had Chronic lymphocytic leukaemia (CLL) for decades and a customer at work told me recently that he has had Chronic lymphocytic leukaemia (CLL) for twenty years. Often it is monitored but not treated, often called ‘watch and wait’.
I hope this is some reassurance.
Hi @Cyclobob When I was first diagnosed 9 years ago, I was shocked on hearing that I had Chronic lymphocytic leukaemia (CLL). However, I was referred to Haematology and so started active monitoring W&W, initially 6months moving to annualy. My lymphocyte count was stable, sitting around 15 to 25.
All was fine until last year when I started to get infections and my annual blood test found that my lymphocyte count had gone up to 75. With this and the enlarged lymph nodes in my groin and abdomen, my consultant then advised treatment, which started in January this year. 6 months of obinutuzumab along with daily venetoclax tablets, which finish in 5 weeks time.
By the time my treatment started the lymphocyte count was 95. So, whilst I understand your concern, I hope the above helps to put your blood results into context, as your levels are close to the norm.
Good luck and take care.
JimR
Hi Lucky & Leigh,
Thanks you so much for your replies, I feel very reassured. I was in the wilderness a bit before, wondering what was good or bad. I am still not sure I am on the right pathway with our doctors, but will get that sorted at some stage soon. I have just turned 73 and keep myself active with dog walking, cycling and free weights so hopefully I can carry on doing that for a while yet.
Thank you
Bob
Thank you JimR,
I was just replying to Leigh and Lucky when your reply came in. And as you say my count of 5.9 is minor compared to yours. I do suffer from enlarged lymph nodes in my groin as well, but they go away again, so not a permanent feature yet.
Hope your treatment progresses well, it sounds like you are staying positive as well which is a key thing.