Hi everyone...I cant remember if I was in this group before. Apologies if I'm still in it. My name is Linda, I was diagnosed with CLL in February 2009 at age 49. Was on W and W until October 2024...had treatment with obinutuzumab and chlorambucil which ended March 2025. Been in remission since. Hope you are all doing OK....and hope to speak to you soon
Hi Lindyloo66 I had a look at your activity and you don’t have older posts so if you were part of the group you may have now joined using a different community name…… but a warm welcome to this corner of the Community.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well as I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL)…… eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
Although CLL has the word ‘Leukaemia’ in it, in Heamatology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
There are a number of active members on the group at the moment so let’s look for them to pick up on your post.
I would also recommend you also check out Lymphoma Action.
Lymphoma Action is the only UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
Yes it is a CLL group, one of the many groups that make up the community…… but this group can be on the slow side.
Ah right ok thanks 
