IBRUTINIB - for 21 months, now stopped

It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation.

After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became raised so my CLL consultant took me off Ibrutinib in June (bloods normal at that stage).

Now, six months later, my blood scores are still all in normal range and I am feeling really well. I appear to be in progression free survival mode and I hope that will last for longer. I have a blood test and consultation every two months.

I have had bi-lateral pleural effusions since I was diagnosed with CLL. After many drainages, I still have some fluid in my lungs which the doctors can't access but I manage quite well with reduced lung capacity and will have to put up with that. At least I can walk up hill slowly with my stick (I'm 77) and after getting home, my breathing returns to normal after a minute or two.

Despite having been in hospital twice this year (pneumo chest infection last Christmas and then kidneys in March), it is so good to feel well again although I can't help wondering what treatment will be appropriate for me when I relapse. Might it be Idelisibib and retuximab or maybe venetoclax if I can wait that long until it is approved.

Happy Christmas everyone. Cheers.

David

24 Replies

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  • Hope u have a healthy and happy Christmas

  • Thanks for sharing Frank. Have a great Christmas and many more Happy New Years to come!

  • Wow David, I am so happy to hear your good news. I had to go off Ibrutinib 5 weeks ago for cardio toxicities. For twenty months I had it in my mind that this was the drug to stay on for life and very dangerous if you needed to stop. So I have been very upset about being off even though my blood counts are better than when I was on. I have been feeling terrible though with flu like symptoms and exhaustion. The Dr. said he thinks it is a flare up caused by withdrawal and if it doesn't get better I could go on a short term steroid. Has anyone else had a withdraw from Ibrutinib? I am hoping I go the way of you David and can stay off a drug.

    Merry Christmas and thanks to all you wonderful Cll members. You make me feel stronger. I don't feel as alone with my thoughts and constant worrying and wondering about the next shoe to drop.

  • Do hope you will be feeling better very soon Janicelee and that you will not have to have further drug treatment for quite a long time. Take care of yourself, and find all the joy and peace in this season.

    Sandy

  • Thanks Sandy and Merry Christmas.

  • Yes I've had to come off Ibrutinib too. It caused interstitial lung disease in me, and I have permanently lost 25% of my lung capacity because of fibrosis. My bloods are good though - even better in some ways - and I've been on a long and high dose of steroids to fend off any remaining lung infection. That's now being weaned.

  • How long have you been off Graham? Did you have any withdrawl symptoms? It's funny, I thought Ibrutinib only worked for the day, so I am surprised they think it may really cause a remission. Good luck with continuing healing of your lungs and Merry Christmas.

  • I've been off it for four months now Janice. Like you you, I understood that Ibrutinib did its business on the day it was taken. But there is clearly some longer term effect, as my lymphocyte levels, for example, are marginally better now than they were when I was on ibruntinib! I didn't have any withdrawal symptoms at all, but all my joint pain miraculously disappeared too...

    Thank you for your kind wishes - Very merry christmas to you too!

  • Janicelee, I have posted the same question twice with no luck of finding any answers.

    What are withdrawal symptoms of Imbruvica?

    What are withdrawal symptoms of Imbruvica 2?

    I did contact the drug maker and consulted with Dr. Couture at Stanford as well as my own hematologist and oncology pharmacists in US with no results.

    I would love to find out any answer to the question.

  • Yes, I am curious about it too. Have you gone off it? Had any side effects? I went off in one day. I was wondering if I should have weaned it off too. I guess there is more research about being on Ibrutinib than being off. Thanks for letting me know.

  • I am still taking three pills a day. I was on two pills for about two months but now I am back on the full dosage. I am very worried what would happen if ever there is any need to get off Imbruvica. The withdrawal symptoms in my case were extreme on two different occasions but according to Dr. Coutre and my own hematologist my case is very unique and neither had any answer for me.

  • I just stopped Imbruvica (ibrutinib) ... cold turkey... the side effects from the drug where far worse in my case than the stopping... actually it was a tremendous relief... frankly...

    I had no post Imbruvica (ibrutinib) issues other than those caused by the drug... they took about 3 months to resolve, but only 90% or so...

    ~chris

  • What a great attitude, David. Wish all of us were in that state of mind!

  • Stay strong - have a happy & healthy holiday!

    Diana

  • Hi David,

    I hope that you will continue to feel well for a very long time, and just enjoy being able to walk slowly up the hill, and being with nature, especially after quite a rough year health wise.

    I wish you a very Happy Christmas season.

    Sandy

  • All the best to you. Walking and drinking much water serms essential. Don't Forget to check your Vitamin D3 level (50-70 would be great) that causes many problem in aged people.

    Frohe Weihnacht!

    Seoul

  • Glad you are doing well. I know of other patients with renal disease and with pleural effusions on ibrutinib. Stay strong Brian

  • I wish there was a formal follow up of those who stop some of the daily pill treatments. I know that there are now trials looking at what happens if you go off of them, but I'm sure there are many who have and have continued to do well. It would be good to know what those patients have in common.

  • Thanks for sharing your experiences - we all learn

    Virginia

  • I've often asked Inwill be on Imbruvica forever and often get the answer " who knows" I've also been told 18 months is a target. Your report of going off at 21 months is encouraging. I've been in 6 months now and after monthly blood work I'm on a new 2 month program. My oncologist says numbers are stable and slightly improved. An MRI last week pronounced my lymph nodes " unremarkable " compared to fully involved 6 months ago

  • I am very curious to know how did you get 18 months target from? Was it your oncologist or did you read about it. In any case, I greatly appreciate it if you could share your information with us.

    Thanks.

  • Agree with pkenn it would be very interesting to know what happens to folks who come off Ibrutinib. I wonder if there's any data available?

  • There are a couple of studies from MDA, on patients who failed ibrutinib... that's different from no longer tolerating the adverse event and side effects... and stopping the drug.

    Two very different situations...

    Be warned...

    bloodjournal.org/content/12...

    ~chris

  • thanks Chris, warning taken!

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