Hello,
I've joined this group to ask you all, please, for experiences with CLL as a background complaint. It was picked up about fifteen months ago during blood tests around what turned out to be mestasising stage four bowel cancer, affecting liver and lungs.
It is very much 'watch and wait' with no treatment planned - my prognosis isn't long enough for it ever to be likely.
No worries then, except that just recently I've been feeling tired and lethargic. If this is due to the other cancers that's sooner than I'd hoped, and in any case I've got no other 'extra' symptoms.
I thought of the CLL, which as you may imagine I'd more or less forgotten about, and realised it could be a symptom of that - which bizaarly would be a relief.
I had a blood test recently which showed vitamin D deficiency which is being dealt with.
My question, please, is what does CLL fatigue feel like, and does it come and go? Are there strategies or tactics for dealing with it?
I'm male, seventy-eight, and broadly in good health, though there is concern about potential blood-clotting so I'm on thinners.
Thanks in advance
Hi Bagpuss the Third and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
I don’t have CLL but I was diagnosed way back in 1999 with a rare, incurable type of Low Grade Non Hodgkin’s Lymphoma (NHL) Stage 4a so although my NHL ‘type’ is different I appreciate the challenges of this journey well.
When I refer to your CLL to be NHL……. Chronic lymphocytic leukaemia (CLL) and Small lymphocytic lymphoma (SLL) are different forms of the same illness and they are often grouped together as a type of slow-growing (low-grade or indolent) NHL……. very confusing ……. but this is blood cancer for you.
I was looking back at your various posts in the other groups in the community - goodness you have had some challenges……
Your body has been through a lot. A vitamin D deficiency will cause some fatigue but as long as your other blood counts are within the acceptable ranges especially your haemoglobin then the fatigue may well be down to a combination of things around all that us going on in your body.
I am now on high levels of blood thinners following a heart attack back in April and my haemoglobin now sits at the lower edge of acceptable (resulting in less oxygen circulating in my body) and combined with all this hot weather I do find I am more lethargic and fatigue following stuff like gardening
No real answers from my I’m afraid but worth talking this through with your medical professionals.
