CLL Support Association
8,876 members14,189 posts


I am still a bit in disbelief regarding this disease but I would like to say that since joining this forum I am not quite so panicky.

I find reading some of the posts really helpful and it's good to know that people are out ther helping each other through this night mare .Well to me like many it is a nightmare .

The first four days of starting the Ibrutinib I felt really poorly ,but the last few days I have begun to feel like my old self again .i have recommended the site to a lady whom I was in hospital with who is having a tough time .I do hope she joins as I feel it would really help her .

Anyway all I can say to each and everyone of you that posts on here is keep going keep smiling and keep fighting .(like I am trying to do . B

10 Replies

I'm sorry to welcome you to this club. Much can be learned here to quiet your mind.


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Thank you Jeff.


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It's very good news to hear you're beginning to feel like your own self again B and long may that progress and continue.

I'm not surprised you're still in a state of belief about this because reading your previous posts, it sounds like the discovery of this condition came quickly and in an emergency situation for you so no time to psychologically adapt!

Ibrutinib is such a wonder drug to many of us and it's great that you're on it. Obviously you were unsuitable for other treatments. It seems to me that even the medics are on a learning curve about its side effects so keep them recorded and reported.

Good luck for your continuing success and keep spreading the word about this site. We are rapidly approaching the 2,000 mark and whilst I hate the idea of anyone needing to join, it's good that they can when the need arises.



Thank you Newfawn and I hope that you keep doing well too .

We all have a lot of living to do and as I said to my daughter who became very upset whilst I was in hospital I have no intention of going any where yet .

Best wishes to you


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Hi it's good news to hear you are doing so well. Best wishes and good luck


Thank you .Yesterday wasn't quite such a good day ,but I woke up at quarter to four the night before and couldn't go back to sleep felt sick all day ,but today I have woken up fine .

I know what you mean about this changing your life .I usually go to Aqua fit and yoga which I really miss .

My husband and I usually travel quite a bit and I have had to cancel holidays already this year .Just hope that I can plan some next year .

I am not a sun worshiper but I do enjoy the warmth of the sun ,and already I am paranoid about trying to stay out of it .

My daughter and I went to motisfont abbey yesterday and took a picnic .i spent most of the time trying to find shade from the trees to sit under .

I'm usually the one that sorts everyone out and I find it frustrating also that my family and friends are now trying to sort me out emotionally.

I wish you all the best and let's keep fighting .



Once you get a response from the ibrutinib, your stress level should begin to subside a little. This race is a marathon not a sprint. Try and pace yourself and don't have conversations with yourself.

Stay vigilant but worrying about things that may never happen can just wear you out.

Life is meant to be lived. Go live it.



Thank you Jeff

I have just read your message when I was feeling low .

Had a good day but suddenly felt very tired .Havnt really done anything to make me so tired .You cheared me up with your lovely message .

Hopefully I will get my head round this eventually .

Take care B


Hi PE 1234,

Just wanted to say hello and welcome to this lovely site. It's made such a difference to my life, and I'm sure it will for you, too. :-)

I'm glad to see that you're feeling a bit better now, after the initial shock and reactions to starting Ibrutinib. I was on a roller coaster emotionally when first diagnosed (8 years ago), but I have calmed down a lot since then... :-) I'm sure I'd have calmed down a lot quicker if this site had been around at that time.

When I read about your cancelled holidays, and looking for shady trees to sit under, I was nodding to myself... Yes... I can so relate to that. But later the holidays get booked again, and we find there are still lots of things to enjoy, even if there will be some adaptations to our lives (like looking for shady spots to sit).

wishing you well,

Paula (in Sheffield)


Thank you Paula

It's good to hear from you .

Hope you are good .

I seem to have started the day feeling a bit nauseous again but hopefully it will get better .

I am not taking the tablets that I was given as they seem to give me a tummy ache and then diarrhoea.

Anyway we are going to have a sunny day in the south so that will be good .

I think this site is brilliant.The support is great .

I havnt told many people of my problem yet as some that I did tell were either horrified or banged on about what I should and shouldn't be asking or doing .

Probably because they care but mind blowing at times .

Anyway I have had my rant ,

Have a good day



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