90 days on Ibrutinib: Today marks the 90th day I... - CLL Support

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90 days on Ibrutinib

Mick491
Mick491

Today marks the 90th day I have been on Ibrutinib. I feel blessed that I've only had a mild reaction and then only in the first month. I still suffer from Infections because of low immunity. This has been demonstrated in the last week with a sickness and diahorrea bug which lasted a week for me but 24 hours for my wife. That said the quality of my life overall has improved dramatically.

I am also observing the results of the trial of Ibrutinib and venetoclax which seem to be quite dramatic. As a CLL sufferer since 2007 and having gone through the aggressive FCR the change in treatment looks promising for the future PROVIDING funding is still in place for both research and the prescribing of any new treatment to patients.

I feel lucky to be given this expensive treatment which has undoubtedly extended my life. Prior to beginning treatment I did not expect to see the year out. I now plan a future albeit with restrictions.

God bless you all and Merry Christmas with a happy and healthy new year x

12 Replies
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Jm954
Jm954Administrator

Good to hear that you’re doing well Mick, you deserve nothing less than a very long remission.

Jackie

I’m glad its working well for you Mick... hopefully it continues for a long time if not indefinitely...

Although you had to hold out for a long time against all odds you’ve made the right decision..

Good luck and continued success.

Stuart

Mick491
Mick491
in reply to Lewis78

Thanks Stuart. It has been a tough year. You take care and the very best for the New Year. Cheers

Amazing stuff Mick. I have been accompanying your story for the best part of the year and am very very pleased to hear you are feeling better.

cllady01
cllady01Volunteer

So good to hear. Thank you for the update.

Mick, I am kind of new on the block here and had to go back and read your personal jihad story to get ibrutinib. Great story, good for you pal. I am ten months on ibrutinib and the side effects I got, which were never too bad, have subsided over time.

I think I'll raise a beer tonite to toast your 90 days. ( And while its true I'll hijack just about any cause for an excuse to have a brew, I truly will be toasting your success tonite) :)

Lovely post Nick, I am 35 days in on Flair trial the Ibrutinib arm but like you little side effects. From the ASH conference it sounds as if Ibrutinib is a key treatment for the future . lets hope as these new drugs are developed, they can be available at a cost insurances, health services etc around the world can afford. I do struggle with this aspect of private enterprise that life saving medication can be denied based on cost and I am an advocate of private enterprise. lets hope a solution can be found

A happy and Joyful Christmas to you Mick

UK Sparky

Really pleased for you Mick after all the battles you had to go through when you were so ill.

Enjoy your Christmas. Joy

Thanks very much, Mick, for the update. God also blessed me with very few side effects and I am extremely grateful.

Best wishes to you Mick. Have a very Merry Christmas 🎄

Pam

All sound great! Well done.

Fran 😉

Great news at long last for you Mick. Long may it continue.

Regards

Colette x

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