First experience of Ibrutinin and rituximab - CLL Support

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First experience of Ibrutinin and rituximab

KAS8 profile image
KAS8
6 Replies

This week I started treatment and so far so good.

100ml on Thursday with no adverse effects then 500ml yesterday again no problems

Making sure I hydrate and moisturise. Using coconut oil and frankincense twice a day on hands and feet to ward off cracks and sores.

Daily tablets regime needs some getting used to but again no nausea etc.

Energy levels good atm and able to do usual light tasks like ironing. Might hit a tired spell later today but so far so good.

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KAS8
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DMary profile image
DMary

Best wishes for continued positive responses. I'm so glad for you.

newyork8 profile image
newyork8

Is this on a trial?

KAS8 profile image
KAS8 in reply tonewyork8

It's the FLAIR trial

Hi KAS8

I am currently on the flair trial Ibrutinib/Rituximab arm.

Don't worry to much you'll be fine, I'm having my final infusion next week of Rituximab next week and have sailed thru it, I was very nervous entering the chemo ward for the first time but once you get accustomed to it it becomes a day out, the only real side effects I have felt are soreness which generally comes on about 2 days after the infusions, in regard the tablets I have had a rash which develop in the second month of taking them and has started to subside now, but from research its quite comon and nothing to worry about, aside from that just feeling fatigued,

The best thing that you can do is drink plenty of lemon water to flush the toxins out and try to rest and eat well,

Good luk with your treatment hope all goes well and im hre if ou need any advice

KAS8 profile image
KAS8 in reply to

Thank you Lewis. It is wonderful to have such great support. You've gotta love the NHS. we are so lucky in the uk. Best wishes x

Jm954 profile image
Jm954Administrator

Really good news!

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