CLL Support Association
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The Beginning

I'm new here! I was diagnosed in May of 2012 around my 56th birthday with CLL. Just recently (August 3rd) I began Imbruvica. I think that I am doing well. I am still working and find myself to be very tired by the middle of the day. I have conquered the diarrhea and some of the nausea with Immodium and drinking at least a gallon of water a day along with fluids from meal times. I am looking forward to spending a long lifetime to watch my grandson grow into a man.

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PT,

That's a common prayer you have. I'm praying for you too. Just try to enjoy yourself and don't let it mess with your mind.

Was the ibrutinib your first treatment?

Jeff

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Yes it was.

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An extremely good reason to stay well PT. You sound as if you are coping well with it all.

Peggy

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You have a good, positive attitude. I wish you all the best especially long , quality time with your grandson.

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Welcome to the site PThomas. I hope that you continue to cope well with the imbruvica. Any questions or queries just ask away.

Best wishes.

Sue

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How did you conquer being tired?

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This would make a good seperate post pthomas. You'd get lots of replies. For myself I think because I am retired I can rest when fatigued, which then allows me to keep going the rest of the day. Not sure anyone has totally conquered fatigue/tiredness but we use small measures so that we can cope better!

I have not taken imbruvica (only had chemo) so have no experience of this treatment. Another good question to ask in a post.

Like you I want to stay around for the grandkids is.

Hope in some small wayI have helped

AndI wish you all the best. Look forward to reading your new posts.

Sue

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Hi PT - IMHO - you do not conquer - you quietly surrender and honor your body with 2 - 20 minute meditations/day. Phones off, sitting in a comfy chair, timed to 20 min ( longer you will feel groggy) - and continue to hydrate, hydrate, hydrate. This too shall pass.

You will be surprised as the adverse effects diminish without any fanfare.

We are all SFLucky!

Welcome and good luck!

Diana

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Thank you!

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Dear PThomas

Welcome to the group. You are right to be so positive. When I was diagnosed 7 years ago (aged 61), with the markers I had I hoped to make it to 70, and felt that anything more would be a bonus. In the last few years treatment options have advanced beyond what I could have dreamt of back then. I have been on ibrutinib (Imbruvica) for nearly two years and it is keeping me very well.

I have gone from not expecting to have any grandchildren in my lifetime to having two - aged 2, and 4 weeks. They are a joy and a good reason to want to be here for them for many years to come.

Good luck with your journey

Charlie Girl

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All of your comments, positive attitudes and real-life experiences have given both me and my husband (he was diagnosed in Feb at 59) such hope. We are facing our future with a greater knowledge of CLL and a much more positive attitude than we had a few short months ago.

Thanks for this!!!

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Hello, just wondering what you WBC count was prior to starting and how often they want you to get blood work in the beginning?

Nathan

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Yes! My white count was 87K but I had severe night sweats as well as weakness and sleepiness to the point I would dose when driving! That was the main reason to begin. At first my blood was monitored by primary q e months and oncologist every 4 months.

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