Hi my name is Ali, ime a new member, diagnosed Cll about 3 yrs ago at 47.
Can i just ask without been to personal as ive spoke to my consultant many times and i dont really get a lot of information back. Or i get told its not a side effect of worry.
So ive had terrible itchy skin now for well over 2.5 yrs, i take garbapentin and benadril, the last 6/7months its got so much worse and burning,the more i scratch the more intence.. any how, my markers , lymph counts only low and it was 10.1 ..6 month ago, tested 2 month ago and was 12, i was last reviewed 2 months ago and it was 15, would that have anything to do with my itching and my lymph count rising would anyone know. ive just got home from gp whos prescribed amitriptyline and steroid creams..ime.so fed up and not sleeping
sorry for the off load,
K️ind regards Ali B
Hi Ali B 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 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (NHL) Stage 4a so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
The only people who will know why your are having this skin problems will be you clinical team. I have a rare skin NHL so my tumours show up on my skin but my bloods are never seen as a sign as to why this happened, Even when my markers are all over the place since being post treatment my skin is now fine.
Our skin is one of the most reactive areas of the body and often can react to internal medical/chemical changes….. if your clinical team have no answers and don’t see this relating directly to your CLL they may need to put you to see a Dermatologists,
This may sound rather odd but chronic lymphocytic leukaemia (CLL) and small lymphocytic lymphoma (SLL) are actually different forms of the same illness. They are often grouped together as a type of slow-growing (low-grade or indolent) non-Hodgkin lymphoma so with this in mind I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos, webinars…. Including about CLL
They run regular Regional Lymphoma Online Support Groups and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey….. so although your CLL has the Leukaemia ‘title’ you can be connected with others with same condition.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to chat.
