9 yearas with watch and wait. 65 yers old. 22,000whc

[Funman]

Still hoping for a cure.

"Funman"

[Newdawn Administrator]

Looking good for you Funman! 9 yrs on W&W and presumably you mean a White Blood Count (WBC) of 22,000. A pretty indolent course if everything else is looking good and you're well with no symptoms.

Long may it continue. You may not ever need a cure in your case.

Welcome to the site too!

Newdawn

[devonrr]

With those numbers it looks like you are giving them enough time to find a cure.

Looks like your one of the lucky ones.

[vinnet]

Congratulations Funman.

I am 65, dx 6 months ago. I pray for similar w&w!!

Can you share about any fatigue that u encountered during these 9 years?If yes, how u managed it.

I feel fatigued , which has brought down my quality of life. I have no other symptoms yet.One onco says that i may need treatment of my cll in one year but another one says 5 years!!

vinnet

[Funman in reply to vinnet]

What are your counts? If you have 2 Doctors that don't agree then don't believe either one. Find a 3rd one.

Yes, I get fatigued. Watch out because be fatigued stops you from doing enough physical things and then you gain weight and then yo get more fatigued from being fat. Eat vegetables. No bread. No sugar. Don't eat anything white. It creates sugar.

[vinnet in reply to Funman]

Funman

Thanks for response/ advise.My wbc is 23000. It was 6500 in year 2010. Became 11000 in 2012 and grew steadily. The doctors do not spend any time with patient . I intend to be with second one who works for a better hospital. Not many choices of good doctors, i am afraid.

I dont eat white sugar but do eat brown bread.Being vegeterian , I have never ever eaten meat in my life.No alcohol and non smoker. Is fatigue plagues everyone with cll or random. Is there no solution?

Is there a way by which my cytometry report can be seen by CLL specialist abroad? He may give correct input.

I am due for my "every three months" meeting in early may.

vinnet

[Hidden]

I was watch and wait for about that long. I was hoping it would stay that way, but in about 12 years I got pneumonia and a WBC of 60,000 then pneumonia again and WBC of 300,000. Got on Imbruvica after the first bout of pneumonia. I've been stable for a year on Imbruvica. Good luck and I hope you stay and watch and wait forever!!!

[Que-sera-sera]

Bragger!! Just kidding...haha! Is it something in your lifestyle that you think is helping you?? I know that's an impossible question to answer, but Congrats anyway !!!

[Funman in reply to Que-sera-sera]

No sugar. Eat vegetables. Don't eat anything white, it makes sugar in your system.

[kathyg]

10 years w&w and will be 65 in June. My white count 69,000 everything else is good. Very thankful. I hope you have 10 more years on w&w.

[school45 in reply to kathyg]

That is so inspiring. My husband was diagnosed Dec-2016 just five months ago. His WBC's have stayed right about 40,000. He has felt really good physically, but has of recent felt very emotional. Keeps saying he just wants to live to be an old man. I keep telling him that this is a chronic diease and that we're going to get through this. Thank you for sharing your story.

[Funman in reply to school45]

No sugar. Eat vegetables. Don't eat anything white, it makes sugar in your system. Don't lay around, it makes a person gain weight. He has to be checked again and follow his counts. He might have had CLL for years and didn't know it. He might live a long time.

[kathyg in reply to school45]

At the beginning I was anxious about where this disease was going to take me, but as the years went by and I saw that it was slow growing and my fears slowed down. My markers are good so that is why it is slow growing. My doctors told me that it was slow growing but now 10 years later I can agree with them. I would also say my faith in Jesus has grounded me. I will be praying for you and your husband.

[vinnet in reply to kathyg]

Kathyg

This is so nice to hear... So u did not get troubled by debilitating fatigue in all these 10 years?? What did u do, which I can follow to win over fatigue.

vinnet

[kathyg]

I get tired more now than in the beginning. I try and exercise, walking the dogs, lift light weights but if I am too tired I just take it easy. I told my doctor about my fatigue and she said that that happens with something that is chronic like cll. My blood work is good but it doesn't tell the whole story.