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    still_fighting shared an experience

    Drug or Chemo Therapy (Chemotherapy): Well another chemo pill shot down...Zydelig won't work for me. Apparently it is messing with my liver enzymes, way to high. So my oncologist has decided to take me off that med and keep me on my Rituxin but instead of a 4-week treatment plan every 6 mths I have to have it every 2-weeks now. I never considered what effects all this medication does to other organs in the body until now. I had to trust that my oncologist had/has my best interest at heart at all times. Finding out that I have a rare harder to treat kind of the CLL doesn't make dealing with it any easier. All this time...10 years!...and had no idea! It's getting harder to fight but I'm NOT giving up! It is difficult because of having to have yet another port put in...this is my 4th one (had a new one put in last year and that didn't last long) but my surgeon was excellent. Still fighting and still going on as usual.

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    still_fighting wrote on Lindyver's wall

    Hi Lindyver welcome to the group! The people here are great and it has helpful information. I joined because I didn't know anyone who had what I had and had a hard time understanding what to expect. I'm so glad I joined. I also have CLL and am 58. I have had it for a little over 10 years and have had several different treatments so if I can help please let me know. No matter what I just keep fighting! God bless you and your family on this journey.

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      Lindyver

      Thank you! I tolerated the first cycle well and am taking it day by day and enjoying my time off till the next cycle.

      about 1 month ago
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    still_fighting asked a questionLeukemia

    Trouble with Imbruvica

    5 answers
    • still_fighting's Avatar
      still_fighting

      Kaz I've talked to and heard that Imbruvica has worked fantastically for a lot of people and really wish I was one of the lucky ones. Even my lawyer has CLL and is taking it and having no problems with it. My oncologist did a special test to find out what other medication I can take but because I have a 'rare' cell type I'm really limited on what will work on me. It's either the Imbruvica or back to IV treatments, today I find out what my oncologist wants me to do. I've been off for almost a week and my joints don't hurt as bad as they used to.

      7 months ago
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      still_fighting

      Thank you cjs7159. Wishing you the best as well. I'll be going back to the IV treatments for we can't get this pill to work for me but the side effects are mounting up so much I don't know if it's worth it. I've had more side effects from this pill than I've had with the IV treatments. UGH, no fun either way! God bless on your journey and keep fighting!

      7 months ago
    • mja511's Avatar
      mja511

      Sorry to hear that you're not having success with Imbruvica. I've been on it since December 2015 with very few side effects. It took about 5 months before I started to see positive results in my bloodwork. I have CLL with 17p deletion. There is also a new drug that just was approved this past April called Venetoclax - maybe asked about that. Stay strong.

      5 months ago