Approaching time for treatment?

My husband was diagnosed earlier this year with Chronic lymphocytic leukaemia (CLL) at the age of 41 (very young apparently). He was initially put on 3 month reviews and at his December blood test his wbc had gone up quite a bit so he’s now on a 2 month review.
Since the meeting at the beginning of December I think he may have been well for a few days - he’s had 3 rounds of antibiotics for different things and half the time he’s going to bed just after I’ve put the kids (3&5) to sleep. He always needs a lie in and doing anything at all zaps his energy.
I’m guessing this means they might discuss treatment soon? I just feel so unprepared in terms of what to expect!
What are the usual steps from w&w to treatment? Does it go from 2 month monitoring straight to treatment? Is a bone marrow biopsy always needed? Are there any ‘tells’ from the haematologists that they are gearing you up for treatment like tests to look out for?
Thanks and hny! :smiling_face_with_three_hearts:


A great big welcome @planb.
I was diagnosed at 53 yrs old with Chronic lymphocytic leukaemia (CLL) and I was on 3 monthly blood tests for about 14 yrs and my bloods fluctuated during that time, then I was put on 6 mthly tests.
Yes, I have had far more infections over the years than I can count.
I also manage my symptoms and fatigue on a daily basis and I often need a nap and when I was working I just worked, ran a home and slept for years
I am not answering your questions because they are ones for your husband (or you with his permission) to ask his medical team because the team take lots of factors into account before deciding anything, like age, lifestyle, health, family history, symptoms and effect etc.
If treatment is required there are new kinder, more targeted treatments coming on line all the time.
You now have the opportunity to write down your fears, questions, symptoms and impact on his life, practicalities etc. for his next appointment,
Sorry not to have answered your questions, others might share their experiences.
The main thing is that you both look after yourselves and be kind to yourselves and please keep posting

1 Like

Hi @planb

I too was considered young to have a diagnosis of Chronic lymphocytic leukaemia (CLL) at age 50 and it’s also less common for women to have it. I was on Watch & Wait for 8 years and had 12-weekly face-to-face appointments with my consultant. During the W&W period, I had all of your husband’s symptoms and more (incl. 2 cases of skin cancer) and I felt like I was on anti-biotics for one infection or other virtually all the time!
In my case, and probably in your husband’s too, they tend to want to wait as long as possible before resorting to treatment and the triggers are pretty specific. In my case, it was a terrible deterioration in neutrophils and platelets and lymphocyte count doubling in less than 8 weeks which caused the treatment to be necessary.
The fatigue is something you just get used to and, you may find that, once your husband gets used to having Chronic lymphocytic leukaemia (CLL), he will be more energetic (it could also be that he is depressed/concerned about the diagnosis, so maybe worth him seeing your GP). I learned that it’s all too easy to put everything down to being linked to Chronic lymphocytic leukaemia (CLL), when, in fact, it’s just normal life/aging/being stressed!
I am writing a blog about my Chronic lymphocytic leukaemia (CLL) journey and the treatment phase, which you and others are welcome to read, in case it helps. It’s
Oh, and I never had a bone marrow biopsy, just blood tests every 12 weeks and plenty of scans to check the size of my tumours (which can be another trigger - when certain tumours grow more rapidly - in my case those in my neck lymph nodes and the growth of my spleen).
I hope that this is reassuring for you. I have always coped with my Chronic lymphocytic leukaemia (CLL) by reminding myself that, the vast majority of those diagnosed, will die WITH and not FROM Chronic lymphocytic leukaemia (CLL)!


Very good post this



@planb It sure is a wonderful post from @SpaceAngel, thank you so much from a fellow Chronic lymphocytic leukaemia (CLL)’er


Hi @planb I have been thinking about you both and wondered how you are doing now?
Look after yourselves