New user needing info

[MaleaElson]

My dad was diagnosed about 5 years ago and has done the rituxan treatments and unfortunately it did it did not last as long as the dr expected it to .he has now been put on imbruvica, and has question as to how he is feeling and wanted me to find out from other people that may have had experience with it . He is experiencing dizziness, vomiting, and extreme fatigue. Do these subside with continued use ? He has also considered stopping the medication, does anyone know what will happen if he just stops?

[t2aa]

Hi, welcome to a wonderful place full of experience and knowledge. There are several people on here that are on Imbruvica. Just search on that word on here and you can find dozens of posts where people explain the side effects they have.

I am guessing one will be answering you soon.

Good wishes to your dad to find something that works for him.

[Newdawn Administrator]

Hi there and welcome. Sorry to hear of your dad’s issues with Ibrutinib. I’m on Ibrutinib too and the side effects are varied and can sometimes feel severe. Thankfully many subside in time.

The important thing is he must not stop taking his meds at the prescribed level without medical permission. It’s vitally important not to stop or reduce without advice.

Has your dad been given anti nausea meds like Metoclopamide to help the sickness? It might help if he could adapt the time he’s been taking it to maybe nighttime if it’s bringing on issues he can’t tolerate during the waking hours. Make sure he takes plenty of water and plenty of loo visits.

Your dad needs to report these side effects to his Consultant but I can say from personal experience that I’ve had some pretty hefty joint pain and bruising. No sickness however. Did he have a tendency towards dizziness prior to starting on the meds? Always worth checking out another cause because we still suffer the other ailments.

Hope things settle soon and the Ibrutinib controls his CLL.

Regards,

Newdawn

[PaulaS Volunteer]

Hi Malea,

Sorry to hear about your Dad’s problems with Ibrutinib.

I too am on Ibrutinib, and had dizziness, extreme fatigue and nausea when I started it. I never actually vomitted, but was close to it sometimes. I also had swollen, painful joints and blurred vision, but hopefully your Dad will escape that.

In my case the dizziness was possibly due to the ibrutinib causing anaemia, which is a known side effect. Gradually it got better (as did the joint and vision problems), but it took several months.

How long has your Dad been having these symptoms? It could be a virus or stomach bug that has nothing to do with ibrutinib. As Newdawn has said, it’s important that he talks to his doctor about these things, and doesn’t just stop the meds or reduce his dose without their advice.

Do keep in touch and let us know how he gets on.

Wishing him (and you) all the best as you work your way through these problems.

Paula (in Sheffield, UK)

[agatha123]

What uncomfortable sode effects! Your doctor needs to take care of that.

I wish I had info!

[AnneHill]

Has your Dad got phone numbers to ring for advice? He can get the sickness sorted and be checked over. Many on this site drink 3 litres of water daily. Flush out kidneys. They say it helps with side effects and as Newdawn suggested try taking in the evening. Always best to speak to his medical team first. Anne

[MaleaElson]

Thank you for your advise and help !! I will pass this along to my dad.