Hi southboy,

Welcome to Cancer Chat. This must be a lot to deal with and I can understand it being difficult for you and your family. I hope that the forum can be of some help to you - we are always here if you need it.

You may find it useful to have a search of the forum (using the bar at the top of the page), if you haven't already, for other potentially relevant discussions and people to connect with.

Otherwise, hopefully you'll get some more replies to your post here soon.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi there

i also have CLL and have been on watch and wait (or more accurately watch and worry). I was diagnosed with a white cell count of 21 in 2018 and was initially on 3 monthly blood checks. That was then reduced to 6 monthly and, when Covid happened, the Haemotologist let me continue the monitoring with my GP with instructions to come back if the whites reached 50 or the reds dropped below 100. My white cells have been in the low 50s for the last year and I’ve seen the Haemotologist again. 
‘The first thing to say to you is Don’t Panic. CLL is a weird one. It’s quite possible that you have few, if any, symptoms… in my case I get tired fairly easily and usually need two lots of antibiotics to get rid of infections. Other than that I’m fine. I’m a 75 yr old female, still active and still working (mainly from home).

‘There is an excellent group on Facebook for UK patients with CLL. Key advice…. Google info is wildly out of date. USA do things very differently. Many patients go for 10 - 20 years without needing treatment and when they do there are numerous excellent forms.  Most of us have been told at some point ‘You are very unlikely to die of CLL but you will have it for the rest of your life’. In terms of its affect on life expectancy it actually doesn’t make much difference provided you are sensibly careful about infections, getting all the vaccinations recommended (flu, Covid, pneumonia, shingles etc) and don’t spend too long in very crowded places.

I can’t think of the right name of the Facebook group offhand but I’ll look it up and add to this thread.

We are all different of course but the vast majority seem to keep going with minor niggles for a long time, have a course of treatment which ‘resets the clock’ and then have more years with no problems before possibly having treatment again. It seems to usually be 8-10 years between treatment and the actual course is nowhere near as nasty as most chemotherapy. Many people continue working throughout their treatment period.  There are numerous men on the Facebook page, and we do all have different worries so you may prefer to find one of them.

Best wishes. NannaB

The Facebook Group is CLL Support Group - UK.  It is a private group with just over 2000 members and is very well moderated, no spam or ads etc and you can post anonymously if you wish.

Hi NannaB

Thankyou for sharing, it sure is difficult to accept having this blood cancer which we wait and worry! I first had bloods back in 2019 with WBC count of 20  and Nov23 WBC of 78.3 with my most recent one of 83 Feb24.my consultant has reassured me that i wont require treatment for at least another 5to 6 year time, and as you say the treatment will work for 5 years or more then onto a different treatment.

My consultant has said that the treatment for Leukaemia has come on leaps and bounds over the last few years and is continuing to do so , good news i hope for the people suffering from this disease.

I also have been told this wont kill me something else will !

I too suffer from fatigue and emotional distress, thankyou for your replie, although i have a great partner and great family to give me support its good to hear from others  with CLL .

kind regards 

Southboy

Thankyou 
I dont have facebook but my partner does and she will join on my behalf . 
thanks again