Is it 17 or 18 years I've lived with CLL? - CLL Support

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Is it 17 or 18 years I've lived with CLL?

william1945
william1945CLLSA
20 Replies

Hello everyone I don't often put messages on here-but-this week is the 17th (or if you believe my wife) my 18th year on watch and wait. Just thought I would share that with you.

20 Replies
oldestnewest
pitbull

Well done, how does it feel? I guess you are over the worry bit now and just take it all as it comes.

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Newdawn
NewdawnAdministrator

Posts like this give me such hope so thanks for sharing and long may it continue for you William.

Newdawn

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Rogerb

Yes, thanks for sharing ... I have just passed my FIRST anniversary, symptom-free(Touch Wood!), and it gives us hope!

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ygtgo

Hi William

I'm 54 and in my 8th year Watch and Wait ... I do feel that it is important, especially to those recently diagnosed with CLL, to know that there is a wide field of experiences here in this forum .... 17 or 18 ... makes me still a novice

1 like
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vinnet
vinnet
in reply to ygtgo

dear ygtgo

Which country are u living? Anything u can tell me that might have contributed to your long wait and watch? Is there any way at all to guess/predict the wnw duration? I am in India with no real CLL specialists....

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Parramatta

congratulations william1945. How old were you when you were diagnosed, and what

stage are you at now?

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william1945
william1945CLLSA
in reply to Parramatta

Was diagnosed just after 50th birtday. At the time I was working in Qatar.The Consultant,an Iraqie called Kakhil Adbul Al Rakhman,said I know nothing about CLL but I will find out.At this time gaining information was hard.Back Up had some leaflets and there was a John Clees video called,I think,So you have CLL.

I saw Khakil for the first 10 years and we learnt together.At first I saw him every month.We became quite good friends and appointments often followed long discussions around Christianity and the Muslim faith.

I am still at stage A and have widley fluctuatin platelets and white counts.My hemoglobin remains normal.

Hope you find this informative.

4 likes
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TundeS
TundeS
in reply to william1945

Hi Williams, This is cherry news. Is there any particular factor that you can share that has helped you so far. Special diet, exercise ...

Wish you the very best of good health.

Tunde

1 like
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william1945
william1945CLLSA
in reply to TundeS

Hi TundeS,

In the words of my Consultant at last visit "don't know what you are doing but keep on doing it. I do not have a special diet but do not eat processed or any type of fast food. Drink wine and beer but not to excess. Takenregular excersise,mostly by walking ,usually 5 miles or so 3 or 4 times a week. Make sure I have plenty of fresh air and drink a lot of water,(from the tap)

I have over the years had periods of fatigue,my remidie for fatigue is to take a long hard walk,usually works.

I just live a normal life,well to me it is normal.

Willie

2 likes
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Soflajoe

Wow..Maybe all those things we hear about ARE TRUE..

There is life after diagnosis and hope.

Congrads !

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william1945
william1945CLLSA
in reply to Soflajoe

So glad it made you smile and hope you go on smiling. There is always hope and life is what you make it ,just needs a bit of tweeking sometimes

1 like
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Gartshore

That's wonderful! It's great being able to share anything on this friendly, supportive forum and when we read good news like this, it is very cheering. In fact, I'm smiling right now. Thank you.

1 like
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mandn

Great. Wish you the best. Would be interested to know what the counts are if you are willing to share. I made it almost 10 years but have now started treatment.

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Quarry

Very good to hear your story. I have not yet made 6 months...but have heard a few of these stories. Many thanks for sharing, as it really gives energy to hope!

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Hazel33

This is so encouraging. Than you for sharing:)

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vinnet

Very encouraging indeed. I am 9months dx and really looking for a long w n w!!! 😊

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SheySheySwimmer

That is wonderful. You're post is inspiring and encouraging. I was recently diagnosed in June with cll after getting a dx of aspergillus in May. I'm being treated for aspergillus and WW for cll. Thank you for sharing it's given me hope.

1 like
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