Newbie just diagnosed

CLL, SLL, HCL

For people affected by CLL (chronic lymphocytic leukaemia), SLL (small lymphocytic lymphoma), or HCL (hairy cell leukaemia) to get together, ask questions, share experiences and support each other.

Newbie just diagnosed

No. of entries: 14 | Posted on 15 Feb 2013 02:32
  • Hi all, thought I would say hello

    Had a shock call from the doctor today, had a routine blood test on Tuesday to check blood sugar and cholesterol only to be called in today and told I have CLL

    Early days and waiting form a specialist appointment but as the notes say it is a non urgent specialist appointment I need I am assuming I am at Stage A and will be monitored.

    To say I am shocked is an understatement so have been reading up all day.  The irony is I start a new job on Monday, I hope my new employer still takes me on otherwise I am stuffed without a job so keep your fingers crossed for me.  Occupational health seem to think I am fit for work.

    That's about all I can say for now until I see the specialist, will be trawling all the sites for support and information.

    Kirk

    Officially a watch and worrier

  • Hi Kirk,

    That's exactly how I received news of my tentative diagnosis, so I totally relate to the shock that you're currently feeling.

    The first thing to say is don't panic! As you no doubt have already discovered, CLL is a long-term chronic condition which may or may not ever need treatment. There are also many variations of CLL so until you've had the usual tests done, there's no way of knowing what particular type you have.

    Do carry on researching, if only to know enough to be able to ask salient questions when you get to see the specialist. Nick (Hairbear), our founding member, put together a number of sites here which will provide reliable, current information which may help and avoid you having to trawl too far.

    Take your time to digest the information available and don't hesitate to ask any questions as and when they occur to you.

  • Welcome Kirk

     

    I agree with Jue. if you're asymptomatic you could be in that percentage that remain so for many years and never need treatment. CLL behaves very differently in each of us and the name leukaemia can drum up incorrect asumptions.  CLL is often diagnosed from routine blood tests, it is a shock and hard to get your head around. But the good thing is that the name chronic means slow growing so we have time to find out how the disease is in us and about the disease. there are a great bunch here who are full of information and experience. learn as much as you need .

     

    Start with UK current sources of information, the latest LLR booklet is a good place to start if you are looking for reliable understandable information..

     

    PDF Download the NEW CLL patient information booklet from Lymphoma and Leukaemia research:

     

     

     

    http://leukaemialymphomaresearch.org.uk/sites/default/files/cll_july_2012_3.pdf

     

     

     

    Chronic lymphocytic leukaemia: in a nutshell, 

     

    http://leukaemialymphomaresearch.org.uk/information/leukaemia/chronic-lymphocytic-leukaemia

     

     

    Support and further information:  

    cllsupport.org.uk

     

    Good luck with your up and coming consultation. keep us posted

     

    Take care

     

    nick

  • thanks for the kind words folks every little helps.

    I do find myself going through a number of emotions at the moment but I said to my wife yesterday, it's no good moping around and feeling sorry for myself, I need to get on with life and fight this setback.

    My next major challenge is telling my father who is in his late 80's and will be devastated and even worse will be telling my Daughter who lives in the North east (I am in the Midlands)  was tempted to wait until I see the specialist but I think this weekend will be more appropriate as I need to go public so I can be open about my research.

    Thanks again and I can see there is a lot we can do to support each other via these forums.

    Officially a watch and worrier

  • Hi to Kirk and MazG

    So sorry you are going through what we've all experienced - the shock of diagnosis out of the blue.  It does take some time to come to terms with but it does slowly get better in time.  I am one year since diagnosis and remember how I felt  when I was told. 

    You are in a good place here, lots of friends who understand how you feel and importantly lots of really invaluable information and links from Nick.

    Take care - we really are all here for one another.

    Love Junie xx

  • Thanks Nick that was some great info and another website and group to join.

    Jue, Thanks for that sound advice, I will take on board what you said, I like you see no reason to tell my Dad yet and my daughter is coming to visit at Easter so may save it to tell her face to face and hopefully by then I will have seen a specialist.

    Officially a watch and worrier

  • Hi Pitbull, sorry about your news but you must really try to stay positive.  I was diagnosed 3 years ago, im 56 now and during that time Iv felt reasonably well, odd lump and bump in my neck and under arms, nothing yet that really stops me doing what I want to do.  I go for 3 monthly checkups and I believe am heading for some form of treatment at some time this year.  Hang on in there, there are some lovely people on this site, it helps being able to ask questions or just have a moan if your feeling a bit down and everyone on here understands what its like to live with CLL.                                                 Also just to let you all know, im going next friday for my bloods after finishing that CLEAR Trial, so fingers crossed that it may have helped my counts,     Love and hugs to you all, especially those who are going through treatment now.   Take care, Pat123

  • Hi kirk ....... Welcolme to the group, sorry that you find yourself here but I'm sure like all of us you will find the support and information you need here, the shock subsides and you will find that most of us with CLL can carry on with life in a relatively normal way....... I was diagnosed 18months ago and I'm looking at the possibility of treatment, In the coming month or so, and I have found the people on here to be very supportive. ......... Any questions ask as there is always someone who can answer......

    may everyone stay well, happy and free from suffering

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