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CLL Support Association
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Ibrutinib

I have just joined this forum as I have read with interest the experience of others on Ibrutib .

I am five days in to this medication .

Did anybody feel a bit under the weather when they first started taking it ?

I have had a few of the side effects but nothing major ,just the feeling of feeling under the weather which I hope is going to get better given time .

I also feel nauseous from time to time .Does any one know if you can take anti sickness tablets whilst taking ibrutinib ?

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I would check with your consultant and the online guidance. I'm not aware of any contra indications in taking anti-nausea tablets, but it's best to be sure. I didn't experience any such side effects myself.

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I was given anti sickness medication with my first course of ibrutinib in case i felt nauseous, fortunately i didnt need to take them. Hope you feel better soon once you have gotton used to the drug

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i meant to say I felt less nauseous yesterday in my post. How long did it take for any side effects to settle for you ? I was diagnosed after returning with my husband from a holiday in Mexico .As it was a 12hour flight I thought I had jet lag until I found I had to keep stopping when I walked and couldn't get my breath .Any way to cut a long story short I went to hospital had four pints of blood and was told the news .

I am on Ibrutinib because I am unable to have chemo or the new trial which is being done at the moment .

I thank you for replying to my question .B

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I didn't feel less nauseous yesterday afternoon ,which was great as I managed to eat some lunch .Thank Graham and Noramaria for your reply .Being new to all this I just didn't know what to expect ,and everyons bodies are different .

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Hi, glad you felt less nauseous, hopefully as get used to the drug the sickness will disappear. Ive been on ibrutinib for almost 4 months now. Side effects are minimal, i have decreased appetite (which is good news for me !)., bouts of diarrhorea (which is now less frequent) and muscle spasms (cramps) in my legs and fi gers for which i take medication prescribed by my consultant. My neutrophils are gradually improving but is taking longer for my hb to come up hence i have regular supportive blood transfusions. However these are beginning to be more spaced apart, i was having two units every fortnight but last time i managed to last a month, the consultant said the time between them will eventually become longer. Hope you contine to make good progress on ibrutinib, it has excellent reviws x

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It's good to hear you're doing well now, Norahmaria. I'd be interested to know what medication you were given for the cramps? Did you have the cramps before you started Ibrutinib, or are they side effects from it?

wishing you well,

Paula

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Hi paula, ive never had cramps like this before starting ibrutinib, like most people just the odd time but this was getting ridiculous. I was in and out of bed every few minutes and my fingers kept cramping up so couldnt hold a book or do anything. My consut

ltant didnt commit to saying it could be related to the drug aNd didnt really take much notice. my magnesium levels wer fine. Eventually he prescribed Quinine Sulphate 300mg tablets. I take 1 every night and they work a treat ! Just wish he had given them to me earlier as it would have saved many sleepless nights !

I hooe you are doing well xx

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Thanks Noramaria,

Your cramps sound like they were REALLY bad, not like the ones I get (a few times a week).

I'd heard of Quinine being given for cramps some time ago, but it seems to be less used nowadays. I'm not sure why.... Anyway, it's great that it's working so well for you. :-)

I'm doing OK thanks. Got a referral to Leeds next week, to discuss trial options at Prof Hillmen's clinic. It was great to see the video of him on HU this morning. He talks very quickly - I'm going to have to listen very carefully. :-) I realise I might not actually see Prof H though, it might be another on his team.

I hope you continue to do well. I've just noticed that you were treated for a Richters Transformation in 2012, and it hasn't come back again. That's 3 years ago - brilliant! (Though I realise your CLL has come back, which is not so brilliant). Was your Richter's the "de novo" sort? (Not sure if that's the right phrase, but I mean the one that's a new thing and not so related to the original CLL).

Best wishes,

Paula

P.S. It sounds like the QE in Birmingham is a good place to be, and were quick to use the new rules to get you Ibrutinib. My hubby and I were in Birmingham last weekend, babysitting for my son and his wife, while they went on an early morning flight in a hot air balloon! :-) I was very relieved to hear when they got safely back to earth...

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Thank you so much for your reply .

Strangely enough as yet I havnt had the cramps ,but before I was on the Ibrufinib I was getting them quite frequently.Were you on watch and wait or was it like me with it coming out of the blue?

As you say the reports are excellent .It would be nice to think that everyone could go on to this and not have to have chemo .

Keep up the good work as this is very encouraging .B

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I was diagnosed with cll in 2005, aged 50. Was on watch and wait for 4 years then in 2009 due to rapid increase in my wbs and falling hb counts i started on 6 rounds of FC and 2 infusions of rituximab. After 2 and a half years in rremission i relapsed in the summer of 2012 and develpoed richters transformation. I then started on CHOP chemo and a new trail drug at the time called Ofatatumab. I finished the course in january 2013, however last year i relapsed again (no sign of the richters this time fortunately). So i am now on ibrutinib. Doing ok so far (touching wood as i type). Hope ibrutinib works well for you. We are so lucky to have been given it. Best wishes x

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Gosh you have been through the mill. It's true to say you can always find someone worse off than yourself .Mine was a rude awakening ,just came out of the blue and was told I probably have had it for many years but was never picked up on a routine blood test .Good to hear you are doing well on the Ibrutinib .The hospital that I am attending I am. The first to have it as a first line treatment.

We are lucky to be able to have such wonderful care ,if this was fifty years ago we wouldn't have stood a chance .

Hope all keeps going well for as I do with everyone else out there .B

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its great that you have been given ibrutinib, according to my consultant it isnt offered as first line treatment (probably due to the extortionate costs of the drug at 90k a year ! ). What hospital do you ayattend ? Im at the QE in Birmingham. I was the first person to be prescribed the drug (not on a trial ) following its recent NICE approval.... very lucky indeed. Lets hope its used more and more for everyone (under the Tory planned cutbacks im not optimistic !).

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Meant to say i was the first person at the QE Hospital to be prescribed it.

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Southampton General . I couldn't believe it when I was told how much the drug was .My oncologist said that had it been eight months ago I wouldn't have been able to have it as they have only just had funding foe it in the last month .Just imagine having to pay for it .Im sure that one day everyone will be on something like this and won't have to go through chemo .

Just wish these drug company's would get the price down .Price shouldn't come into it . B

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Hello.

I was very unwell on day 2 of Ibrutinib with fever nausea ans general exhaustion - which landed me up in hospital. After this I gradually felt better than I had for years.

For nausea I recommend ondantsitron and also ginger. Got through lots of ginger nuts as well as homemade lemon and fresh root ginger tea. Eating little and often also helps.

Finally do make sure you drink plenty. 2 - 3 litres a day. As well a helping protect kidneys it really does make a difference to how you feel not only in first weeks but also longer term

Very best of luck and sincerely hope that Ibrutinib will make a huge difference to you

Charlie Girl

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Thank you so much for your reply Charlie Girl .

I am so glad I joined this site as I no longer feel alone .

My first four days I thought gosh I don't think I can keep going with this drug ,but today again I havnt had the nausea .I have been chewing ginger and that does seem to help .I will have a go at the ginger tea as well.

Thank you once again and I'm so glad you are well

B

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As I recall when I began Ibrutinib 2 years ago, I was given a prescription for anti-nausea. I have never had to use it. After some months diarrhea became a real problem and I reduced the Ibrutnib from 4 to 3 pills. No diarrhea after the change.

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Hi...I am here on behalf of my mum. She has CLL since 2011...she has been through all kinds of ups and downs with her health ...anyway now at 81 she has been given the chance to try ibrutinib...mostly as her spleen is so enlarged and painful...also the glands in her neck can sometimes inhibit her breating and swallowing...the first day she took 3 tablets and was ultra dizzy...so cut the dose to 1 the next 2 days still a little dizzy ...Now at day 5 she took 2 pills and is ok but weak/bruising/has blisters in her mouth which bled ...so she is feeling afraid and not very optimistic.(Also just lost a neice to a horrific reaction to chemo)

So ...I am trawling the net looking for encouragement from those who have gone before... I want to be able to tell her to hang in there and things will improve... can anyone help me

sincerily thanks

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Sorry to hear of your Mum's challenges - not helped by losing a niece in similar circumstances either! If your Mum is experiencing side effects from the Ibrutinib I gather that they do tend to reduce over time. Also, it's more a case of slow and steady improvement with Ibrutinib than with chemo treatment.

Your reply here will get less responses than if you start a new post about your Mum, so I suggest you start a new post with a more specific title like "Ibrutinib effectiveness with large spleen and neck nodes? Are side effects of dizziness, bruising and blisters common?" That way others with a similar experience can quickly find helpful information too.

Neil

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Hi Neil...we are from NZ so not so far away...thanks for your lovely comments and helpful hints...I am niave to forums so don't really know my way around ..cheers

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Please tell her to hang in there .

When I first started I had quite a lot of nausea felt really like I had flu without the temperature ,had a fungal infection between my legs lots of bruising (this is due to the ibrufinib ) Blood spots which I still get but my consultant isn't worried about ,so I take notice of him .

I was very frightened and almost threw the capsules out the window .BUT I am so pleased I didn't .

The side effects are much less now and yes I too did get dizzy but now this too is less often .

I am a lot younger than your mum but tell her from me if she can get over the next couple of months I'm sure things will start settling down .

We are very fortunate to have this amazing drug .

Give her my best wishes and tell her to hang in there .

P

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hi, my father is complaining of extreme tiredness that he could not get up and walk by himself, he finished 2 months now, and still no good effects, did you have the same effect?

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Hello Chimini

Two months isn't very long to be on treatment with Ibrutinib .These things take time .Remember that Ibrutinib is slower than chemo ,but if you feel worried try and get your dad to get an early appointment to put your mind at rest .

I did and still do get days when I get more tired than I used to but these days are less frequent than they were a year ago .

I also sometimes get some nausea in the mornings mainly .For that I chew some ginger and that usually settles things down .

Maybe your dad is anaemic or he maybe low in vitamin D .

Let me know how he goes on .I do hope things soon settle down for him .

Try not to worry too much as hopefully this tiredness will settle down .

Brenda

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Thanks Brenda. We had blood test last day and could not believe the result, getting higher this much for the first time. He 's been CLL for 20 years, and Imbruvica is our 5th treatment. This must be the reason of his fatigue, and also at the same time he is fighthing with pneumonia. May be he needs more time to recover, he is a real survivor I believe.

Chimini

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In my earlier post I forgot to say tell your mum not reduce the dose without her consultants consent

P

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Hi pe1234...hey thank you so much for your encouragement...I read your post out to mum and she was touched...it really does make a difference to talk with others going thru simular experiences...how long have you been on ibrutinib and what improvements have you noticed...thankyou..from NZ

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Hi there

I have been on ibrufinib three and a half months ,but there are others who have been on it for three years or so .

Your mum may get different symptoms as time goes by but they don't last for long .

Some people say that they get stiff joints .I haven't had those same YET .

I do try to do a little yoga each day ,mostly standing poses as if I do things like camel or cobra I get even more blood spots over my legs .

If your mum can get her to maybe shrug her shoulders up and down and move her arms in circles both ways a few times .Also look over her shoulder to the right and them to the left slowly it will help to keep her top half a bit supple .

I also walk for twenty minutes twice a day .

I still get a few side effects but these are much less than they were .

When I first started my gums bled quite a bit both when I cleaned my teeth and when I didn't .

I now use a mouth wash twice a day and it is a lot better .

I have also become quite paranoid about hand washing and using a sanitiser .

I go around door handles light switches all my kitchen appliances and taps every morning .

Don't know if it does help but it makes me feel better for doing it .

Once your mum gets over the first few weeks she will find she feels a lot better

What I find most difficult at the moment is not being able to go in crowds but I'm sure as time goes by that will get easier too .

We are all here to encourage your mum when she feels a bit down .just tell her to keep going and she will be fine .

Best wishes

P1234 (Brenda )

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