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.

13 Replies

  • 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?


  • Yes it was.

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


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

  • 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.


  • How did you conquer being tired?

  • 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.


  • 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!


  • Thank you!

  • 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

  • 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!!!

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


  • 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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