Having had a good week one, things have changed little.
- nauseas last couple of mornings post tablets
- 200m into a walk, burning sensation from feet travelling up legs to chest.
- love bite type marks when scratching following the above
- today I have a sore right hand and knee and left ankle. They feel tender, are sore to move and are stiff if I sit still for a while.
It is all bearable but I feel like a right old bird!! 😳
Oh and a really sore throat and hoarse voice!
This might have nothing to do with your treatment. I would get this checked out!
Hope you feel better soon.
Sue
hopefully things will be on the upswing soon.
From my experience that all sounds 'normal'. Hopefully everything, including the the arthralgia, will improve and abate eventually as it did for me. It's important to try to maintain the dose, at least in the first year, with as few dose interruptions or reductions as possible to get the best response.
Hang in there and keep going, it's worth it.
Thank you. It's all bearable ATM. Just got to keep asking hubby to do things and concerned how I am going to be able to work with my right hand being so sore.
Hello there,
Wishing you all the very best during treatment.
It sounds like your coping really well with it all.
I finished the IR arm of the Treatment in November, although still on the Tablets.
I had the Muscle pain etc, and the Trials Nurse, recommended I switch the Tablets from the Morning to Bed time, so that I would sleep through the Nausea, headache etc.
And this seemed to work.
I have had marvelous results.
It will soon fly by, keep smiling 😀
Kelly
Thanks Kelly. It's a minor setback in the grand scheme of things and it's nothing I can't cope with.
Hello,
I have been on Ibruitinib for 3 years and found right at the start that the anti sickness tablets they dish out with them made me feel sick so I stopped taking them after a few days and have not taken any since. Don't often feel queasy but if I do it goes away quickly without any help from another drug. Stay with it and good luck.
Mike
Hi Mike. I have to be honest that I haven't used the anti nausea tablets, mainly because 8 tablets a day is more than enough to swallow and as you say, it soon passes.
Mike that's great 3 years in how do you feel
Good , majority of the time. Much more energy and the only side effects are the occasional joint pains which go away in a few days .If too painful paracetamol fix it. Other than that my skin has irritated since I had the first infusion(2years before I was put on Ibrutinib) . Annoying at times and various creams work for a while but it hasn't gone away.
This is really just a minor thing. I swim twice a week and play golf occasionally and I am 76 so some of the aches may be down to old age.
Please let me know how you get on .
Thanks everyone. I called the hospital this morning and they have suggested paracetamol and codeine for now.
Hi KAS8, hope your well, I'm six months further down the line and looking back on what you've said it sounds familiar and normal, it's probably just your body adjusting to the medication, I suffered a rash and a few similar side effects but had forgot, most of these symptoms, hopefully these symptoms should subside after a period of time and you'll start to feel better, it's just fear of the unknown at first as you probably feel your having a reaction with every new issue, carry on and I'm sure you'll be fine in know time just remember to drink plenty of water with the occasional bit of lemon in it to flush all the toxins out, keep checking your temperature just in case but I'm sure you'll be fine soon
I take Ibruvica before bed and that has helped with my symptoms. Over time they have improved too.
Well hopefully these will pass and you will feel like a young bird again lol thanks for your updates x
Flair trail update Ibrutinib and Rituximab round 4
Bendamustine & Rituximab 
Rituximab and bendamustine 
