I would like to know more about treating CLL patients with Imbruvica. Someone out there currently taking it, for how long, and what side effects are you experiencing? I underwent chemotherapy (FCR) in 2010-2011. The CLL went into remission. Now my white blood cells are increasing and my platelets are decreasing. I am in very good shape and my quality of life is excellent. My oncologist is considering treating me with Imbruvica. I would like to know more about it from a patient's standpoint. Thank you.
Imbruvica: I would like to know more about... - CLL Support
I would ask my doctor if Acalabrutinib or Calquence would be a good choice. I have been on both and was taken off the Imbruvica due to pneumonia issues they felt a serious side effect and put on the Calquence and I love it!
Just a thought. All the very best to you and welcome to our special community!
Welcome Desert Rat6. Many do fine taking Ibrutinib, however I switched to Alacabrutinib due to side effects. I have been living pretty much a normal life.
I have been on ibrutinib 6 years and still doing well ,infact I live a totally normal life . As for side effects the first few months are the worst but they subside and continue to subside over time I dont really have any now what so ever .
Hi Desert Rat, welcome, from New Zealand. I have been on Ibrutinib since September 2016 and the drug has brought my Absolute Lymphocyte Count down to near normal, though it fluctuates up and down. I am taking 280 mgs rather than the full dose now, as I can tolerate the side effects much better.(There is no choice to change to another -ib drug here at present). Life goes on much as normal . Best wishes. 😊
Hi, l have been on full dose Ibrutinib for 16 months and my lymphocyte count has dropped from over 100 to 17, which is slightly higher (15) than when I was diagnosed in 2009. Fortunately, I have been able to tolerate the medication, so no serious side effects at all. I do have a couple of the minor side effects like split finger nails but they are all very manageable. As mentioned by others, the periods of chronic tiredness from cll don’t go away. I am able to have a relatively normal, active life (e.g. hiking, golfing etc).
I may be starting this med soon as well. How do you manage split fingernails?
Keep the fingernails cut short all the time... I pretty much check them daily.
Thank you! That’s an easy solution!
Imbruvica 8.5 years. Doing very well!
I’ve been on ibrutinib for over 2 years, full dose. No side effects at all. My numbers turned to normal quickly (about 3 months) and are still at normal range. My energy came back too, feeling great now better than before treatment. Make sure you drink allot of water 6-8 cups a day. It seems allot but it’s easier than you think. Good luck to you.
After chemo in 2015 I have been on 280mg of Imbruvica . White Blood cells in check… play golf 3 times a week and live a full life. Male… 73 yrs old.
Welcome to HU. I’ve been on Ibrutinib for 5 years 9 months with only positive results. Previously I’ve been treated with FR and BR. Ibrutinib gave me a life again. I have energy and am able to do the things I enjoy. I feel blessed. Good luck. Sally
Imbruvica is a great drug. The only side effects I have experienced are small blood markings occasionally on my arms. They come and go. My numbers have remained the same for the last several years! (No other side effects)
I've been on Imbruvica for 6 years. I've never had any side effects from it. Within 3 months of starting on Imbruvica my lymph nodes were normal, my blood work was almost normal.........the oncologist said it was amazing how well I did on it, so maybe I was the exception, but, I'm still on it and feeling OK. Blood work now is good, My platelets are a little low and my red blood count is a little high...........other than that everything else is normal. I don't get the flu or colds, etc. so my immune system can't be too bad. BUT............everyone is different, so, give it a try, see if it works for you. All the best on your treatment journey. I'm sure you'll do fine........a positive attitude helps, and so does exercise, outdoors and indoors if the weather is bad.
I am day 28 of taking Imbruvica. I am very healthy ( other than the CLL!) and also exercise and active every day.
Here’s my experience so far:
I was queasy for a couple of weeks.
I developed an amazing all over huge, itchy rash. Benadryl and Sarna cream were an immense help.
Weirdly, I don’t feel fatigued at all. In fact I feel like I have more energy rather than less. I am an artist and it seems like l am being more creative/productive in the studio. A big part of that, I think, is the psychological aspect of knowing that something is actually being done to address this medical issue. The 6.5 years of being in “watch and wait” really frizzed me up at times. I am not good with ambiguity.
I have been masking everywhere I go as thus medicine seems to create more vulnerability in the early stages. As my mom used to say, “Simetimes things have to get worse before they can get better.”
Sorry this is lengthy! I am new at Imbruvica and look forward to reading other responses!
PS - for some reason, this medicine makes me crave cantelope and watermelon. Peivavblt because they are hydrating and sweet at the same time?
Best wishes to you!!
you should look into combo finite treatments after FCR
Venetoclax plus Obinituzumab V + O
Or Venetoclax plus Acalabrutinib
I’m about to start after relapse after FCR and am going with
The have the best outcomes for relapsed CLL and can be stopped when you achieve MRD usually in about a year
Good luck and God bless with your treatment
I’ve been on Ibrutinib over 2 years - bloods normal, lymph nodes back to normal size (that part happened within a couple weeks of starting the drug). As others experienced, I have a few fairly minor and manageable side effects. I am glad to be taking Ibrutinib rather than chemo - and as a bonus, I have read that this particular drug may improve the functioning of my T cells and possibly actually improve some aspects of my immune system (compared to what it was like before treatment). Good luck with whatever you choose to do!
I see you joined us today- welcome aboard.
You can find several past answers in a box on this page labeled "Related Posts" - its in the upper right column on computer screens and scroll way below on mobile devices.
*imbruvica/gazyva or imbruvica/venclexta
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