Where am I heading.

[happymac]

Was diagnosed in sept 2010 and been on watch and wait since. Don't have any of the normal systems but wbc has gradually rise to 110. Haemoglobin and platelets seem to be ok .

Think my cll was in early stages when diagnosed has anyone's cll followed a similar path to mine and i know its hard to predict but when should i expect symptoms to appear.

[Cammie]

Happy mac

You may never get heavy symptoms my story seems similar to yours diagnosed in 2000 no symptoms other that some raised lymph nodes max 3cm under arms and smaller one in the neck. Count raised to 130 in 2005 short burst of chlorambicil then absolutely fine apart from the odd infection for 9 further years. Counts raised and some dropped to a level where a bone marrow biopsy was necessary which found 97per cent infiltration!

Still no major symptoms but a question over whether treatment should begin. 4 weekly check ups over 12 month still no major symptoms except swollen spleen no pain etc.

So I got fed up of running up to clinic every 4 weeks expecting to be told here we go!

So I decided alongside of my family and consultant to go ahead with FCR.

Wanted to start living as normal a life as possible again so here we are just in the second round of treatment 15 years after diagnosis.

My white blood count finally peaked around 180 or 234 when I got an infection.

The problem with this disease is it is so individual and our journeys are so different before reaching the cocktail bar.

I wish you good health whilst on w and w I am sure some of the more knowledgeable members will enlighten you further. If you give a bit more background about yourself and your blood counts they will give a plethora of good advice.

[happymac in reply to Cammie]

Thanks Cammy I know we're all different and its hard to predict where we are heading and your case confirms this.

It will be 5 years come september since i was diagnosed and has anyone like me wondered sometimes if they have cll. Of course i do have it and should be quite thankful that it is doing what it should do and is progressing slowly.

I do have swollen nodes in neck but nowhere else have never even had a cold.

Once again thanks Cammie and would love to hear more comments.

[Psmithuk in reply to happymac]

Yes, that's me too. It's about 13 years since diagnosis, and although I have various niggles, I assume they aren't CLL. \it was the 'lumps' in my neck that sent me to the Dr in the first place, and they and the inguinal(?correct term) ones come and go. I do have bouts of tiredness, but they resolve after a while, and so much could just be my age (67).

Long may we remain like this!

Chris UK