What to expect with CLL treatment?

Hi, My husband was diagnosed with CLL in Oct 2023 and has been on a watch and wait scheme, however at the last consultant appointment he was told that treatment is now needed.

His is not symptomatic but his 'numbers' are trending all the wrong way and so in the consultants words ' we dont want to wait for a nuclear fall out!' so it was always inevitable that treatment was going to be needed at sometime.

He is presently waiting genetic blood results (I assume waiting on assessments relating to the TP53 and or IGHV gene results) before the course of treatment can be individualised and started.   I guess responses etc will be different for everyone but generally just wanted to know does anyone have any experiences and what can we expect?

Thank you

  • Hi Fay0303, 

    Thank you for coming here and sharing your story. It must have come a bit as a surprise to be told that treatment is now needed for your husband after his Chronic Lymphocytic Leukaemia diagnosis but it's good that he has been so closely monitored for the last three years so that they could keep an eye on those numbers and were able to decide that treatment is now needed even if he is not currently symptomatic.

    We have information on our website on treatment for CLL which you might find interesting to read as you are waiting to find out more about the course of treatment. I hope that you get the answers of the genetic blood results soon so that you then know what the next treatment steps might be. As you say, responses will be different for everyone but it is often helpful to connect with others who have been living with CLL and to hear their stories and experiences. I have had a little look on the forum and I have found for example  's CLL thread - this member was looking to talk to others living with the condition so don't hesitate to reply to their thread if you wish to do so. There is also this CLL thread by  where you will also see various responses from other members affected by CLL for example  who mentioned having treatment after a period of watch and wait.

    These are just a few examples and if you type in the keywords 'CLL' in the search function located at the top of the page you will be able to see other relevant threads on the subject and feel free to respond to any you feel you would like to engage with. 

    I hope that you get some clarity soon as to what to expect once you get all the results and if you have any questions or feel the need to talk things through at any time with our cancer nurses, don't hesitate to give them a call on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    Wishing your husband the best of luck for the start of his treatment - I hope that it will all go well for him. 

    Best wishes, 

    Lucie, Cancer Chat Moderator