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    still_fighting asked a questionLeukemia

    Trouble with Imbruvica

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      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.

      2 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!

      2 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.

      6 days ago
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    still_fighting shared an experience

    Oh No (Chemo pill causing heart problems): So I went for my usual Rituxin treatment in January of this year and I had a TERRIBLE reaction to it. But finally got through my treatments and my oncologist decided it was time to change up my treatment and put me on Imbruvica instead of my Rituxin. I was afraid of the pill and met with my oncologist and we talked it out and agreed it was the best option. After I started the pill I got sick with a cold that ended up lasting me a month and had to go off the pill until all the infection was gone...felt like forever. I started back on the chemo pill and everything was fine for about a month then I started feeling like something in my chest was hopping around doing flip-flops. The next day it was still happening and then I started getting dizzy and took myself to the ER where they had to get my heart beat back into rhythm. The ER doctor made me an appointment with a specialist who put me on a heart monitor for 2 weeks and gave me additional medicine to help with my heart. Before the 2 weeks were up my heart started getting crazy again and I ended up spending the night in the hospital because I had gone into Afib. Now I have developed Afib because of the Imbruvica but I can't live without either one. The medicines the heart doctor has to put me on doesn't always work well the any of the chemo drugs I have to take so there's ALWAYS a risk. One more thing to worry about. UGH!!! The heart doctor made an adjustment to my heart medicine and so far I've been doing fine (thank goodness) but I have to take only one of my chemo pills a day instead of the 3 I was supposed to. I lost my medical help the 1st of June so now I'm scrambling around trying to get a supplement insurance to go with my Medicare but because I'm under 62 I'm finding this VERY DIFFICULT. I honestly don't know what I'm going to do because the chemo drug IS so outrageously expensive. That 20% every month is too much for me to pay. I sure hope we can figure it out before I have to go back to these specialists. Now I know why the elderly end up starving because they can't afford their medicine and eating. So now I have heart trouble as well as dealing with a very high risk form of CLL. UGH...the Good Lord willing I'm going to keep on fighting no matter what! God bless and ya'll keep fighting too!

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    still_fighting shared an experience

    Oh No (Cancer is back/Recurred ): Well I went in last Wednesday to start my next Rituxin and had one of the worst experiences ever. My oncologist said my leukemia is starting to get 'active' again and we need to start on a new drug...Imbrivica I think it's spelled. She wanted me to go ahead and have the Rituxin and boy did I have a bad reaction...now the chemo nurses think I've become allergic to it and now I don't know if I'll take my treatment this Wednesday or not. The drug that was keeping me in remission no longer seems to be working so now it's time to change up my medication. I'm nervous about side-effects because I've had such bad ones before. We'll see... I hear this new pill is pretty good so hopefully it'll be good for me too! :)

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