Hi Stephan thanks so much for sharing your journey. I’ve just been diagnosed as stage 2 so not too many symptoms, but always so tired, and I have severe back problems having had 20 ops the last in February with a major revision and further fusing which was and has been horribly painful but the plus has been the discovery of CLL which has explained many of the symptoms my back specialist couldn’t understand. You have answered several questions about my immediate future and I can see that I need just to get on with life. Incidentally the doctor who told me I had CLL was equally as bad as yours. I was told I had terminal cancer. I sat bewildered and shocked then he added you’ll have between 5 months and 5 years! The referral to a Haematologist took over two months all the time fearing the worst and not being the best of company! Then I was told the average expectancy for someone similar to me is over 7 years and 10 years+ is frequently attained - being 80 years old now, I’ll settle for 7 or 10 years anytime, as I quite possibly will die of old age rather than cancer - but as the medics say, everyone is different so anything can happen, and averages are averages. Anyhow the very best of good luck to you, and again thanks so much for taking the time to give your story, and thank you for thinking of us CLL virgins who need as much TRUE information as we can get . . . . . . . With love and best regards, Chris.

Thank you, Stephan for your interesting and enlightening talk re. CLL. I was diagnosed in December and started Imbruvica in February. Unlike you, I have almost no reactions to my medication. Yes, I still get tired very easily, but when walking (my daily exercise regime), I can push beyond the feeling. I am 85 years old and had Non-Hodgkins lymphoma for 8 years before spiralling into leukemia. I too am lucky because one needs to be a millionaire to be able to take Imbruvica.

Thanks for sharing🤗!

Thanks for sharing your experience. I have Cll on top of MS. I don’t feel like I have cancer. Start treatment in two weeks

In Australia with CLL and on trial of Acalabrutinib. Also have achy body for few days intermittently but have knee and hip pain nearly every night which needs analgesia. Above drug is very effective as well and one day in near future there may be a cure for blood cancer. Good luck to you and thanks for your story.

Could you explain your worsening blood tests? What in particular is “worse”? Do you have 13 q deletion?

Hi Stephen! My husband was diagnosed at age 50. We are three years in and so far so good other than some fatigue. Otherwise don’t know what’s in store for us

Thanks for explaining your realistic and practical view. Am newly diagnosed Jan 21 , 2 minor symptoms only. Do you think I should join a clinical trial?

Update,how is your health now?