CLL

I am a 53yr young fit active healthy person who has Just recently been diagnosed 1month ago with cll with white blood count 20.8 than week ago done 16 not sure what that means except early cll which scared me to start with but with more knowledge in regards to this I am a little hopeful for the future . yet still worried as I gym walk eat well and look after myself so very worried what this could do to me .

But I intend to remain positive after reading a lot of information and stories from others with is disease .☺

10 Replies

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  • Hi Gisela1961

    Fit, healthy, active, sounds good to me and no need to panic, keep it up. However here we acknowlege how scary this diagnosis is, we have all been there so understand, and are sorry you have had to join our community. Lots of helpful people here to help get you through these early days.

    Can you perhaps share what led to your diagnosis, and if you have been given your ALC (absolute lymphocyte count) as this is an indicator we all use to see what is going on ?

    Meanwhile try to relax and get on with living, this normally a slow progression illness.

    Best wishes

    Bubnjay1

  • Hi again I just had routine yearly blood test with no illness or feeling sick so hence very shocked as was my Dr as I watch my health and was on a fitness challenge at time of my diagnosis.

    Thanks againBub

  • Welcome Gisela and I echo the sentiments from Bub. It's a tremendous shock to be diagnosed plagued with uncertainties particularly when the initial 'treatment' is often no treatment at all in Watch & Wait. This pinned post highlighted to the right of the page has a lot of really helpful information for you at this stage. Understanding and feeling more in control and knowledgeable helped me once the major shock subsided. I was diagnosed at about your age 3 yrs ago.

    healthunlocked.com/cllsuppo...“welcome-to-the-family”-a-practical-guide-for-newly-diagnosed-cll-patients-and-those-close-to-them.

    It must feel more shocking when you're previously been well and fit. But that will stand you in good stead should you require treatment at some point though I'm not aware of it having a direct effect on stalling disease progression. Clearly however, our levels elevate during times of illness and infection so a healthy lifestyle is always beneficial. Don't get too hung up on the numbers Gisela if you're feeling well. As Bub has said, the absolute lymphocyte count (ALC) is watched because rapid increase or doubling once you're over 30 can indicate disease progression but people can go into the thousands and remain treatment free. You may remain symptom free for many many years and there's no need for sudden alarm. Treatments are very effective now and developments are happening all the time.

    Sending you supportive best wishes and please feel free to post anytime if you need support, help or advice or indeed feel you can offer the same to others.

    Newdawn

  • Hi gisela

    Sorry that you have been diagnosed with CLL, but happy that you have found our community.

    Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.

    Best not to troll the net, a lot of it is out of date ... any news, treatments or breakthroughs are covered on here.

    First up will be a visit to see your consultant, he/she will explain things to you and normal practise would be to have blood tests every 3 months to let the consultant see if there is any pattern appearing in your blood counts.

    I was diagnosed with CLL aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

    Did you find out that you have CLL due to a routine blood test ? Personally I only found out due to a routine test because I had a persistant sore throat that was taking too long to heal.

    Of course this is a worrying time for you, we all can relate to the ' shock ' of being told that we have CLL.

    Your post also points out positives that we like to hear ... I am a 53yr young fit active healthy person - early cll - I intend to remain positive ... and most importantly - I gym walk eat well and look after myself.

    There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL.

    If you post again, it may help to know your location, ie the country or nearest town or city, or the name of the hospital that your Consultant work in ... as someone here with local knowledge may be able to help with more accurate information.

    ygtgo.

  • Thanks for your response. Its great to know there is support with people who understand what i am going through and how at times you can feel scared and worried about the unknown . I need to remain positive as for the first couple weeks I had breakdown was stressed and hence was making myself sick so I had to pull myself together and think of others who are going through similar or worse conditions and change my mindset mostly I am feeling fine although at times I think to much and know I have to watch my health and look after myself .

    Great to hear from yourself and others who are willing to offer support and share there knowledge ☺

  • Hi Gisela. I can only echo all of the above words. I was diagnosed on June 1st (routine blood test) and went into complete panic mode. Couldn't eat, couldn't sleep, couldn't think, cried all of the time. All completely natural responses I now see. This site Gave me the strength and courage to get through (still does on a bad day!) Here you will find a wealth of help and advice from people who have actually 'been there'. Great knowledge and Information from the more seasoned members of the group and help and support from us newer members who are feeling just the same as you.Make use of it all, it provides hope and calm at this worrying time. Read and learn about CLL but try not to let it consume every minute and make sure that everything you read is up to date. Even then, things change so quickly. There is much to be hopeful about. Let us know how you are. Best wishes. Peggy.

  • Hi Gisla,I know how you feel right now but its true it gets better,a few months ago I was told I have CLL devastated is not the word I couldent eat sleep or think of any thing else then I found this site and its brilliant I never feel alone now and there is always someone there to listen with a wealth of information we are all in it together,apparently I have had it since 2006 and its hardly moved so take care and it sounds like you are doing all the right things.very best wishes to you and sending a virtual hug.ps there are no silly questions on here.x

  • Hello Gisela, when I told my husbands haematologist something I had read on here he asked which site I had been on, when I replied that it was this one he said this was a really good site to go to for information and support.

    I wish you all the best, hopefully you won't need treatment for many years.

  • Welcome Gisela sorry for the circumstances but you are in the right place. Im 43 was diagnosed at 41 and also fairly fit and eat well with no health issues. It's a tremendous blow and a shock to the system but after a bit of researching and some time to reflect I have been able to accept that I'm lucky, all things considered. There are much worse diseases, my own mother is suffering from mesothelioma.

    Treatment has come a long way. Besides FCR which is the standard there are a few new drugs already available and many more being researched as I type. I truly believe in a few short years this will be no worse than living with diabetes or another chronic condition. And in a few more there will be a cure.

    My two bits of advice would be to find a specialist who you can truly connect with, my doctor is wonderful I can't even begin to describe how patient and understanding he is with me. The second is to get a FISH test done so you can have a bit more info about what type of CLL you have so you can research more about the treatments for that. It's important to arm yourself with as much info as possible without overloading. The people on here are wonderful and will answer and all questions that you may have. It has been a God send.

    Best of luck

    Peter

  • Welcome to the club no one wishes to join!

    I empathise completely with your reaction of shock and trepidation; I was diagnosed as a consequence of a routine blood test aged 52. I was fit and healthy and work hard to remain so, 13 years later. I am still on watch & wait (worry) and happily so. Keeping fit, remaining positive and living life to the fullest extent possible is my approach to coping with our "Sword of Damocles". Others on this site with experience of treatment will be knowledgeable and supportive as and when necessary.

    Very best wishes for your journey.

    Michael

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