CLL Support Association
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Just found out

Just found out I have early stage cll. A bit upset but not too bad, as I am pretty old and have had quite a life. I don't think I'll be having any treatment at this stage. There has been much cancer in my family, father died at 57, brother 37, mother 71, wife 48, so evil. I will just enjoy my life as much as I can and stay creative. Nice to meet you all.

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Hello flugel1 welcome to the club no one volunteers to join but all find the best club they have ever been in🙂. It is a shock at first, deep breath, read info available on site and ask questions. We all help each other.

Hugs

Milton Keynes Marc

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Welcome, there are some good people on here with a great deal of knowledge on this disease, so if you have any questions fire away.

You say at an early stage which suggests you have a low count & what you will find is that it could be many years before treatment is needed, if at all. What seems to help is staying reasonably healthy, exercising on a fairly regular basis (not necessarily anything strenuous, but regular walks of 30 mins or more) & I believe trying to stay positive that this illness will not define how you live your life.

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Welcome flugel1 to our virtual clubhouse. Lots if good folks here. I wish you well. bill

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You have a great philosophy flugel, sadly borne out of personal loss. Cancer is evil and you've suffered in its relentless wake with losing family members far too young. I'm not sure of your age but there's every chance you'll never need treatment. Up to a third don't and for more mature people, it's a liveable with condition that they die with and not of. Hope it doesn't cause you too many problems and that your life has CLL as barely audible background music rather than a pervading daily tune! :-)

Warm regards,

Newdawn

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Welcome flugel,

I have just joined this sight, have had CLL for 4 yrs. and am still in the watch and wait mode. I'm 68 yrs. old, and other than fatigue and shortness of breath, I feel good.

Wishing you the best,

Winsey

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Welcome flugel. I'm so sorry to hear of your diagnosis, but it sounds like you're dealing with it.

My husband has CLL (61) and is thankfully on W&W and symptom free. We have learned far more about CLL than from any of his appts with his specialist. We were devastated at first, assuming the "end was near" and have since realized it's a chronic, slow progressing disease, and for the most part have resumed living life.

Please ask any and all questions you might have, or just even pop in to read the many informative posts.

Wishing you many many happy and healthy years to come.

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Lean on us especially during these early days. It will get better we promise.

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Hi flugel and welcome. I've had CLL since 2002/3 without treatment needed, and I'm 70 in December. Don't give up on living your life exactly as you want to.

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Keep smiling flugel 1. I was first diagnosed in 2011 and been on W and W but in the last 6 months my wbc count went up more than in the previous 6 years. It had slowly climbed to 72,000 by feb this year in 6 years, about 3000 every 4 months but from feb 2017 till recently WBC count went up another 86,000 so 2 months back my doctor wanted to start treatment but I said no. Then 2 weeks ago as it went up again I capitulated and started a course of chlorambucil a week ago. This is an old drug and I should know being a retired pharmacist but it is the mildest of chemo and so far the other cells in blood picture are pretty normal. The point I am getting to is I have tried to stay positive just as you are and I do believe even though I am a little apprehensive about ingesting toxic stuff one has to look at the bright side and stay active, enjoy the things you like doing in life. I do believe a positive focus like you have is a key component of prolonging the deterioration. Stay creative and good luck. Welcome to our exclusive club though I would probably prefer a more exclusive club like say the Monaco yatch club. Oh well in another life!!!

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Hi, sorry to hear you have CLL, welcome to the forum. Just to say, best not to rush to deciding never to treat. Also allow the stories to soak in of the many who survive for years without even needing to make that decision (because it is not necessary to treat early CLL anyway). But also, allow yourself the opportunity to grieve a bit and be angry a bit. After all, this IS cancer, and whilst its very much a better prognosis than many other types of cancer, the shock of it will take some getting used to. Believe me, many of us on here no only too well. My diagnosis was around 4 months ago, and I like many others on here am still struggling a bit to come to terms with it. Make sure you are under a good specialist service for CLL (many local services are not so familiar with dealing with it). Whereabouts do you live, we may be able to recommend a place. I am under the UCL specialist CLL service and its been great: I have a Clinical Nurse Specialist I can call any time, and I even see a psychologist. Take advantage of everything the NHS has to offer. But also determine to live your life and enjoy it to the best of your ability.

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Welcome flugel1. The first thing that came to mind as I read your post is what a blessing that were were not diagnosed until you were "pretty old." Take Newdawn's comments to heart. Well stated and right on target.

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Flugel1 - I felt the same way you did. I was diagnosed with NHLymphoma and my white count remained at 30,000 for about 10 years and had no treatment at all, then I went downhill and wound up in the hospital and was diagnosed then with CLL, and that's when I heard about Imbruvica and said I would try that. I had no bad side effects, no nausea, really nothing at all, now I just have aches and pains and bruising easily which makes my arms and legs look awful, but.......I'm old too, so, who cares. I'll take this as long as it works, and I don't know how long that is, but taking 3 pills a day as a treatment is about as easy a treatment as I've ever heard of, so I'm so glad he suggested it. Actually, I wasn't going to do anything when I went downhill but die, figured I had had 10 good years with NHL. If he hadn't suggested the Imbruvica pills that's exactly what I would have done.

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