New to the group Hi

Hi Biffo47 and a warm welcome to this corner of the Community although I am sorry to see folks 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 number of active members on the group at the moment so let’s look for them to pick up on your post.

In the early days it is always best to call new Symptoms in to your team so they can make a judgment as to if they need to see you or not.

Although CLL it has the word Leukaemia in it, in Haematology terms this 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 about 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.

Hi Mike thank you for the reply and sorry to hear about your rare illness I thought I had come to terms with it and wasn't overly worried about the diagnosis to start with but now I'm starting to think more about it and being my age (58) wondering what will happen, with new symptoms coming along thinking is it part of the CLL or just getting older.

I haven't told anyone about my new symptoms yet just thinking I am wasting their time.

Thank you for the information that you have posted I will have a good look at them.

Biffo47 (Andy)

Oh Andy Biffo47 you are certainly not wasting anyone’s time….. clinical teams would rather hear about any changes and rule them in our out,  rather than hear about things later and be on catch up.

I had my second Allo (donor) Stem Cell Transplant way back in Oct 2015 one month before my 60th birthday…..(See my story)…… 9 years on I am living a great life being in remission all these 9 years.