Hi all, got told i had cll in feb, since then im finding it hard to cope with the breathlessness pain in legs and stomach on watch and wait, but finding it hard to cope with all these symptoms every day brings something new, these past couple of months my life has changed so much gone from fit and healthy and working to being at home not able to walk far being out of breath having to use wheelchair when i go out, is anyone else having same problems do i need treatment keep getting chest infections generally feeling unwell each day would be greatful if someone could reply thanks
Hi Trace74 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
Bizarrely CLL is seen by Haematologists to be in the same basic camp as Low Grade Lymphomas….,, yes very confusing especially as CLL has Leukaemia at the end of its name. But these types of blood cancers are slow growing and as you are experiencing, Active Monitoring (Watch and Wait) is the go to choice of approach…… I was on Active Monitoring for over 14 years before my condition developed to the point that full on treatment was needed and at a point it would be most effective.
When was your last face to face with your consultant?….. if your symptoms have changed significantly you should get in contact with your team and discuss this.
My type is NHL was a rare skin Lymphoma so I did have some maintenance treatments over the first 14 years to keep things under control.
Lymphoma Action (also cover CLL and SLL) have a great Lymphoma Action Buddy Service where yoi can be linked up with someone who has walked the same CLL journey.
Always around to chat ((hugs))
