CLL

Hi Hyacinth and a warm welcome to this corner of the Community although I am always 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 Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

CLL IS a slow growing blood cancers and Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment although I was having skin treatments as my type of Lymphoma was a skin type.

I often talk with people on here and on another support site who have had little or no treatment as their condition had not developed sufficiently to allow the treatment to be effective.

Getting clear information is important so this link may help you get some questions together Questions to ask your medical team about Lymphoma

Do check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

Although CLL it has the word Leukaemia in it, in Hematology terms 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.

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 first 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 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.

Thank you for this information, it has been very helpful indeed

Hi Hyacinth, I am newly diagnosed and on the watch and wait programme. The waiting time is difficult and now I am looking at CLL as all bit at a time. There are support groups but we are all on some of the many different treatments. That is the good part of CLL there are treatments and many who never need treatment. I am concentrating on what I can do- eat a diet supporting my immunity, keeping my diabetes under better control, exercise, and using mindfulness to help my anxiety which is a considerable challenge with CLL.

Thank you so much for your response . I know so little about all this and am so grateful for any guidance 

yes I will need to know about healthy eating and anxiety control and exercise.

at the moment I am in can’t be bothered and what’s the point mode 

All advice is very gratefully received