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CLL Support Association
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Ibrutinib in September

Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin

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Hi Martin,

how did your appointment go ?

As you know from a previous post on month 7 and up/down, but much more up's which is good, and I was in a bad state pre treatment.

As you are in the UK I assume you will get your pills in a big brown jar for 28 days to start with. I know there are different schools of thought as to when to take them ! I prefer to take early and in bed with a bottle of water. That way I don't forget and gives me time to get up and feed cats etc before having breakfast.

The list of side effects and do/don't on the fact sheet is scary but you will get used to it. I also printed off a list from the McMillan website and I understand from another post that Bloodwise also have one, although I couldn't find on the website.

As I have taken so many meds over the years I wrote a list of all the frequently used ones and checked on my second appointment. My GP has made a list of the don't take and they always check before prescribing anything new.

Minor side effects including a terrible dry mouth, but luckily only for two days. Good luck

Colette

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The appointment went well, as in I m gonna get treatment and there doesn't seem much of an alternative. Didn't realise the cost of the drug , is there a black market 😂.

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Hi Martin,

not that I know of ( did wonder about street corners in Brixton for any spare ? )

How much were you told ? My GP said 5k a month. One reason why I am happy that they are taking me month by month is that I would feel dreadful if I had any spare. The nurse called me ages ago to say she was ordering me 3 months worth and I said don't as my lymph glands are up again.

Hope it works for a long time for you.

Colette

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I googled it and said about £70 000 a year.Dont understand why you said you would not take it as lymph glands are up ? That's what I thought they are for

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Hi Martin,

my lymph glands went down dramatically when I started on Ibrutinib and I and then the Consultants were concerned then they reappeared after 4 months and yet again they thought that it might have transformed to Richters, hence the lymph removal for biopsy. Luckily again clear.

Your Google figure may not allow for price NHS pays, but of course all the extra visits, blood tests etc all add up.

You should also be given Allopurinol to start with in case of build up of Uric acid and something in case of Diarrhoea. I would have expected you to be seen monthly for the first three months and then every three months if your bloods are looking ok.

Colette

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Thanks for advice ,Richters is a scary word

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I dread it ! I was furious with the Haematologist that originally mentioned it ! she seemed to have missed the 'bedside manner training day' ?

C x

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Hi Martin

That’s good news you’ve got the Ibrutinib! I’ve been taking it for about 23 months now and has worked very well and still is touch wood.

The most important thing to do with it is keep yourself well hydrated with at least a couple of litres of water a day and it should keep a majority if not all of the side effects away.

You’ll still probably get a few in the beginning which is common like that rash and a few aches and pains but as long as you tolerate it they should subside after a few months.

Do you have to do 3 monthly hospital checkups ?

Stuart

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Thanks, not sure on check ups , currently on 3 months so I presume it will stay the same

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Dear Stacky66. I’ve been on Imbruvica for 5 yrs. it has been doing well. Anna

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Thanks that's good to hear

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How do you find it?

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