There seem to be so many reasons why you start treatment for CLL. I’m curious to know if people starting out meet just one or generally many of the criteria, and do people feel dreadful or fairly ok? My wcc has gone up rapidly but apart from crushing fatigue that’s about it. Thanks everyone.
Hi @Carolly. It’s great to hear from you again.
I have a different blood cancer but know many people on the forum who have CLL who will be able to share their experiences.
How have you been? Is treatment being considered for you or are you still on active monitoring?
Fatigue is awful and can be do debilitating! Is it worse at particular times or just continuous?
Look forward to hearing more from you X
Hi Nichola, I’ve been classed as CLL now and my wcc has shot up recently (doubled). I had scans of just about everything last week and will see my haematologist this week but just don’t know what to expect. He always asks me how I feel and I don’t know what to say because I can’t do what I used to (fatigue and breathless) but I can do some everyday stuff. Will I know when I genuinely need treatment or will the decision be made for me? It all seems so uncertain. Thank you.
It’s a tough one isn’t it. I’m sure you’ve read all the info on the Blood Cancer UK website.
Your fatigue is obviously really bad at the moment and I think you definitely need to make a list of what you can and can’t do to share with your consultant I know sometimes it’s about if your able to manage your symptoms but that’s alongside a discussion with your consultant, who I’m sure will be able to guide you with regards to your question. Also, the support line is there if you need a chat before you see him/her.
Please let us know how you get on at your appointment and take care X
Hi @Carolly I also have CLL and I have been on watch and wait or active monitoring for 17 yrs.
I also have fatigue and now I think about it I suppose that I have learnt to manage my life around it.
My white blood cell count fluctuates.
When I see the consultant I believe he looks at my full blood count results and any other test results I might have had.
He will usually examine me for any swollen lymph nodes/gland/enlarged spleen
He will usually or might ask:
About fatigue, breathlessness and weakness
I believe the consultant will then take some or all these aspects plus age, family history, lifestyle etc into account before deciding whether to suggest a treatment plan or not.
I stress I am not medically trained but I have heard consultants discuss this.
New research, trials and individual targeted treatments are coming on in leaps and bounds, although I would rather avoid treatment if possible.
The Blood Cancer UK website has lots of information about CLL.
You can always talk to their support line the details are above.
I would suggest that you write out all your symptoms and how they effect you on an everyday basis. Also write down all your fears, questions, thoughts and practicalities and ensure you ask everything you want to and are satisfied with the response at your appointment.
Please do let us know how you get on and look after yourself.