Hi all. I have just signed up. 8 months ago I was diagnosed with CLL, stage 3 melanoma and very low immunoglobin levels. I am 60 and feeling great but concerned about the future. Wondering if there are others in the same boat and what your experiences are.
Hi Mokoia and a warm welcome to this corner of the Community although I am sorry to see you joining us and sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL)
But for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
There are a few of active members on the group at the moment so let’s look for them to pick up on your post.
Although CLL it 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.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma 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 and being treated for 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.
