Hi everyone, I’ve been living with CLL for some years and it was only in 2023 when I had been diagnosed with mycoplasma pneumonia that I was informed I also had CLL. I have ongoing joint pain, severe swelling of my glands in my throat etc. but was informed that this was normal, however, after seeing the ENT consultant and a biopsy taken of the area, I was diagnosed with lymphoma at the base of my tongue. It is only in the last month that a treatment is now available for CLL, which is a combination of Venetoclax and Acalabrutinib. I’m yet to start this as I was feeling a lot better but now the swelling of my glands, battle to swallow and a continuous cough has started again. I’m wondering if anyone else is already on this treatment and what their experience is.
Hi LorriBea and a warm welcome to this corner of the Community although I am sorry to hear about your CLL journey to date..
I am Mike and I help out around our various Lymphoma 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 Low-Grade Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
You may know this but although CLL has the word ‘Leukaemia’ in it, in Haematological 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.
I have had a totally different journey so have not had these drugs but let’s look first any members with experience to pick up on your post…… although I have had some very aggressive treatments especially between Oct 2013 to act 2015 and on the whole it was all very do-able.
There are a number of members on the group at the moment so let’s look for them to pick up on your post.
If you are in the UK you may want to check out Lymphoma Action.
Lymphoma Action is the main 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 5555where 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.
