CLL and how it has affected other people and the symptoms to look out for

Hi I've had cll for at least 6 years, it is an awful shock to find you have this illness. I haven't  had any treatment and still seem to feel quite well although I do get tired quite easily, so I think that is quite positive as you are not sure to expect when you are diagnosed. Mentally I admit I can have days when I do feel down but that's not every day. I feel you must try and continue with your normal life and dont let this take over your life by fearing the worst. Please take care of yourself 

Hi smg thanks for the info. For me because it’s early days I’m still coming to terms and any little thing out of place I’m panicking it’s just the word cancer and that to me means death I’m not even close to accepting the idea  . Thanks for your reply wish u all the best 

Hi and welcome to the Community.

Although I have a different type of blood cancer I can honestly say that after you get to understand the disease and have a clear understanding how you will be treated........ the noise between your ears will start to calm down and you will understand that unlike solid tumour cancers - blood cancers are very treatable and nowhere near a death sentence........ and this is coming from someone who was diagnosed with a rare - incurable skin Non Hodgkins Lymphoma way back in 1999.

I was also told that I would never be in remission and would need treatment for life........ fast forward to September 2016 I was told I was in Remission NED (No Evident Disease)....... so do be encouraged.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names the Thehighlander

Always around to help out as best as I can.

Hi the highlander . I’m useless with tech will do my best lol your story is encouraging and I’m glad for you wish you the best .actually you’ve cheered me up . Thanks 

We with CLL have ALL been totally shocked with our first diagnosis, but after a while and some routine hospital visits for checks get somehow used to having this disease.

Many of us do not require any treatment and are expected to die of old age well into our 90’s..

If treatment is required there are many new oral drugs that have become available within the last 6 years, and so the old idea of harsh chemotherapy for our cancer is now fading away.

The future for us with CLL has actually never been brighter.

I was diagnosed 15 years ago in 2005 with CLL, and have had NO treatments of any kind..

CLL is what they call a Heterogeneous Disease, meaning that the outcomes are varied.

To determine a ‘possible’ outcome requires a whole series of complex tests which the NHS is unlikely to offer.  This because the disease can change and then your tests can become invalid.

Doubtless you will need more information and or moral support since you have been recently diagnosed.  You will find all this at The Chronic Lymphocytic Leukaemia Support Association, mostly known as the CLLSA.

This free to join association has a forum on HealthUnlocked, lots of pamphlets that you can download, as well as regular meetings of people with CLL throughout the UK. At these meetings will be patients just like yourself, and there will be a lecture from a known CLL expert doctor/researcher, plus a free lunch and coffees etc.

I would strongly suggest you use your web browser to locate the CLLSA and follow the links from there.

Good luck

Dick

Hi I was diagnosed last week with CLL no treatment required as yet but would also like to know what symptoms others have when at stage 0 as I don’t feel too well picking up all kinds of infections & feel generally unwell with some aches & pains not sure if related to CLLor not? Thanks 

Hi I was recently diagnosed with CLL  I can certainly say that I seem to ache more since but I haven’t really seen any infections increased try and stay warm and wrapped up when you go out to try and minimise any risks .Rob

I was diagnosed in 2005 with CLL and have had NO treatments of any kind, nor any significant illnesses, but CLL is what they call a Heterogeneous Disease, meaning that the outcomes are varied.

Some patients seem to often go down with the flu, while others never do. 

This may of course be due to diet and or a lack of exercise.  The correct diet AND regular exercise make a HUGE difference in any outcomes.

Additionally where the patient works and any stress levels can make a difference.

Many school teachers for example are constantly around small children, who often in winter will be spreading a cold or flu.

I would look to your general health rather than assume any problems are due to the CLL.

Good luck

Dick