Have been informed that I have awaiting appt in December to talk to haematologist. Very few symptoms except tiredness. Picked and diagnosed as has had elevated WBC for four years
Not too sure what to do. Regularly do exercise
Hi Henryrosie and a warm welcome to this corner of the Community although I am sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Lymphoma Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well as I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Low-Grade Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
You may not know this but although CLL has the word ‘Leukaemia’ in it, in Haematological terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
The fact that your appointment with a Haematologist is not until Dec says that your CLL is slow growing and does not need treatment……. This often happens…… what to do?…… Continue to live a normal life.
I continued to work for the first 12 years after my initial diagnosis in 1999 in a demanding teaching job on a full timetable living a normal life….. yes I had various skin treatments over these first 14 years but that is due to my type of NHL but it took 14 years before I needed any full on treatments.
There are a number of members on the group at the moment so let’s look for them to pick up on your post.
If you are in the UK you may want to check out Lymphoma Action.
Lymphoma Action is the main UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
