Ibrutinib - 4 months in (FLAIR)

[zaax]

Neutropils now at 1.5 (I though they would only go up to 1.2 because of the Ibrutinib), everything else on the up as well. What a wonderful drug.

[Shira7]

That’s great!😊 I’m at the hospital waiting to see the haematologist and get my results. I’m on ibrutinib too - for the last 3months. I’ve had some side effects but some seem to be abating. I’ll I’ll know more shortly! Did you have any?

[Hidden in reply to Shira7]

Hi Shira7

Good luck with your appointment hope it goes well.

Most the side effects will dissipate over time but remember to keep well hydrated as this will keep many side effects at bay and prevent any further problems occurring.

Stuart

[Shira7 in reply to Hidden]

Thanks Stuart still waiting to be seen😊but they’re so good here. I have had some ups and downs but heart flutters we’re horrible😏 had tests for that and seem to have an extra heart beat which millions of people seem to have think maybe the Ibrutinib has enhanced the feeling of that. Also had cramps a bit and seem to have lessoned but still got other strange things happening! Spots eye infection but now cleared and of course that could be just me!☺️ Thanks for the reply

[Hidden in reply to Shira7]

Everything you’ve mentioned is very normal.. you might be a bit nervous or anxious in the first few months which is very understandable and this will intensify things making them seem a lot worse.

I’ve been taking Ibrutinib for 22 months now and I’ve suffered all the symptoms you’ve described but they will fade away eventually..

It’s important to try and devise a routine of eating well keeping hydrated limiting stress and some non strenuous exercise each day and in the coming months when your blood results all return to the normal range you’ll feel much better.

I think its always going to be a bit unnerving when you have appointments as it is for every one.. I’ve got my next hospital appointment tomorrow and although I’m not as bad as I used to be it’s still in the back of your mind.

Good luck let us know how you get on

Stuart

[Hidden in reply to Shira7]

Shira,

The extra heartbeat is because you heart is soooooo full of love. Doctors won't tell you that though.

Scott

[Shira7 in reply to Hidden]

Thank you Scott ☺️

[zaax in reply to Shira7]

Yes. In May (second month) a few 1/2 days of nausia, I do find that small meals rather than big ones helps, mild joint pain and calf cramps, but now some hand cramps and that's about it. Also I have a lot of stamina, and some people are having problems in keeping up

[Hidden]

Hi Zaax

That’s good news your results are on the up. Hopefully over the next few months your neutrophil count will recover and return with everything else to the normal range.

Remember to keep well hydrated... and also be aware of for the possibility of infections and shingles when your bodies low.

Good luck and continued success.

Stuart

[Hidden]

zaxx,

it is good to hear you are doing well on IB. I wish I could get some of that sweeeeet BTK inhibitor stuff in my veins.....