At what stage is CLL determined as a terminal illness?

Hi All
New person here.
I am 61 and 5+ years into my Chronic lymphocytic leukaemia (CLL) diagnosis, fortunately fit and well and on a “wait and watch” list with twice yearly blood assessments etc etc.
After being diagnosed and not being clear on my life expectancy (no longevity in my paternal ancestry - I have exceeded the average).
I subsequently decided to remove the stress of work and concentrate on my wellness. Running, walking, cycling and playing football weekly. I followed Covid guidance through lockdown.
I look at my aches and pains as age related self infliction and try not to dwell on whether or if the fatigue I feel sometimes is the Chronic lymphocytic leukaemia (CLL) or if I’ve overdone it on the exercise - I suspect the latter as my markers are still all low and I have no indications of unexplained weight loss, night sweats swollen lymph nodes etc.
I do take more time to recover from infections and that self inflicted exhaustion so understand where I am most the time.
I am a glass half full chap and the aim of getting fitter was to help me in the long term.
I hope more inroads to finding better treatments and breakthrough’s in science to help others yet to be diagnosed in the future.
I do suffer anxiety and the stress of the economy on my pocket is a worry. So financially managing the next 6 years till state pension comes in is a concern and I wondered if others have been or are in a similar predicament and what approach they have taken. I don’t want to sell my house to bolster my savings to survive but my private pension has taken a hit, cost of living is going up.
At what stage is Chronic lymphocytic leukaemia (CLL) determined as a terminal illness and has anyone received their state pension earlier due to this diagnosis?


Hi @Tim a great big welcome from a fellow Chronic lymphocytic leukaemia (CLL)’er.
I was diagnosed at 53yrs old and that was 18yrs ago so I am 72yrs old now and always been on watch and wait.
I really related to everything you said.
Yes, if I get colds or infections it takes me longer to get over
I have really got to know myself and how I tick.
I do not deal with what personally stresses me and more stresses me since diagnosis.
I know what fatigues me and the cause and effect.
My parents died at 66yrs and 71yrs old. on my mothers side all the females died in their 60’s.
I also believe that I am fitter now than I have ever been in my life.
Before Covid I was doing classes at the gym every day.
Now I am doing pilates weekly and walk every day.
I blame the media for the anxiety caused because we are bombarded by doom and gloom.
The GP said I should have a good longevity of life and I am more likely to get run over by a bus.
Research and trials, often funded by Blood Cancer UK, are coming on leaps and bounds.
As for pension rights I cannot answer that I don’t know if the Blood Cancer UK support line can help or Macmillan or Citizens Advice.
I do not think of my Chronic lymphocytic leukaemia (CLL) as terminal, I just live with it.
Please keep posting and look after yourself.
I am just waiting to see how my finances pan out, who knows.


Hi Erica
Thanks for replying and suggesting other charities to go to.
Fantastic to hear how you have coped with aspects of your life keeping a positive mental attitude is key and trying not over analyze when a 6 month check up is due. I say don’t fret if it is different there’s nothing you can do and if it isn’t you’ve worried for no reason.
I expect you have seen many medical views that have been helpful and watched as further advancements in treatments have been instigated.
However, does seem to me that the information available at first diagnosis was and still is pretty much the same re % survival rates after diagnosis. Removing the stress, making life simpler and maintaining one’s well being is the key to good health.
Here’s to remaining well and enjoying life


Hi @TimI still get anxious before and during tests, results and all medical appointments, I am definitely work in progress.
My 70th birthday, just pre Covid, was my bestest ever and I still do not know what I want to be when I grow up.


Like @Erica I’m a long-time survivor (diagnosed in 1995, a few months before my 44th birthday). 5 years is nothing!:smirk:


Hi Bob
Thanks for replying.
That is an early diagnosis you had. The majority as your no doubt aware aren’t until early sixties.

Well done on defying the odds nicely and long may you continue to do so.
Yes 5 years is minor in comparison and I certainly hope anyone diagnosed early (before 60) has all those years without treatment and continue past the averages after that.
I certainly intend too.


Good Morning @Tim ,
A very warm welcome to our forum. I am super pleased you have found us and certain you will find some really brilliant support in here.
Firstly, it is really great to hear that you are keeping well and remain under w &w.
However, the concerns you have so brilliantly raised are really valid Tim and appreciate it must cause some level of uncertainty & worry.
I’m also certain that your concerns are also concerns of so many others within both the Chronic lymphocytic leukaemia (CLL) and wider blood cancer community.
Please do know that if this is something you would like to talk through our support line is always here for you - 0808 2080 888.
As Erica has already suggested it might be important to understand if you are entitled to any additional financial support, particularly as a result of your chronic blood cancer.
In case its helpful in any way- we have just very recently updated our work & financial support pages which talks about the rising cost of living and offers some top tips to consider- Blood cancer: money and work | Blood Cancer UK.

Again do feel free to contact our team should you prefer to talk anything through.

Best Wishes, Lauran


Hello Lauren
Thank you for taking time to reply and consider the concerns I raised that may affect others in the short and long term. I am just preparing for the latter and wanting to understand what benefits and rights may be available for when that time comes.
I promised myself I would not worry about my diagnosis from a health perspective until “w&w” became something else.

Thank you again


Hi Tim,
Thanks for your lovely reply. Please do know that if you would prefer to talk any of our financial support information through with our team, our helpline is always on hand for you- 0808 2080 888.

Take Care, Lauran

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