Now being prescribed Ibrutinib : Hi all Good... - CLL Support

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Now being prescribed Ibrutinib

Mick491
Mick491

Hi all

Good news, saw my consultant today and he's going to start me on Ibrutinib at the beginning is September. I'm having a bone marrow biopsy prior. Can't tell you how relieved I am as I have been so I'll and still not to good. So all being well the futures looking better than it was.

Thanks for all your support over the last few months.

Mick

27 Replies
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Hidden
Hidden

That’s good to hear.. it’s not the golden ticket you expected but at least your get your life back..

Are you home now or still in hospital? How you feeling.

Stuart

Mick491
Mick491 in reply to Hidden

Hi Stuart

I was in hospital for a week and have been home a week. The trial drug is still not available yet, but am too ill to wait longer. Luckily Ibrutinib is now available to me. It has good reports so I am grateful for that. My fatigue is causing me to sleep 16 hours a day on top of other symptoms and I can't carry on like this.

Hope you are doing ok

Mick

Hidden
Hidden in reply to Mick491

I’m 23 months into take Ibrutinib now and doing really well thanks.

It’ll probably take a few months to correct your blood levels in the beginning but it’s really good news you’ve finally got it and have avoided further FCR damage..

Hopefully in a couple of months you’ll be back on your feet and feeling much better.

Well done though I know you’ve been battling for a long time but fingers crossed now you recover fast and back to good health.

Stuart

GREAT news.

I hope the Ibrutinib does the trick for you, and that you are soon back to better days.

Dick

Mick491
Mick491 in reply to Kwenda

Me too Dick, thanks

Jm954
Jm954Administrator

It feels like we’ve waited a very long time to hear this good news. I hope you’re feeling much better soon Mick. 😊

Mick491
Mick491 in reply to Jm954

Thank you x

That's great news, Mick! Ibrutinib certainly gave me my life back when I started last September.

Great news Mick and wishing you a speedy return to good health.

Colette x

Mick491
Mick491 in reply to mrsjsmith

Thankyou

PaulaS
PaulaSVolunteer

What a relief, Mick. Not long now till September.

Wishing you all the best,

Paula

Brilliant news.

Ibrutinib started working quickly for me Mick and I hope the same for you. You may get some side effects I warn you but to feel better is the aim.

At the moment I am enjoying life as it should be .

Improve quickly.

Sue

Mick491
Mick491 in reply to Wroxham

Thanks that's reassuring

Great news mick; wishing you all the best and hope you start feeling better real quickly x

Mick491
Mick491 in reply to 9876

Thanks

Excellent news Mick. Hopefully on your way to feeling much better once you’ve got onto Ibrutinib.

best, rob

Hi Mick, Great news you are now slated for Ibrutinib, I am sure it will be a big help to get you back on track, it only took 3-4 weeks to get my WBC numbers back to where they were at diagnosis 8 years earlier so I hope it can have the same dramatic effect for you also. I would also like to thank you for your efforts in playing an important role in the reversal of the ridiculous NHSE restriction on Ibrutinib. I wish you well. Mike

Mick491
Mick491 in reply to Redlion

Thanks. But it really wasnt me that got the reversal. It was the tremendous pressure by CLLSA, Bloodwise and Leukaemia Care that got the changes. I just made people aware. Cheers.

Mick

Redlion
Redlion in reply to Mick491

You are too modest. Mike

Hi just read your story good luck

Such good news, Mick. It’s been a long and upsetting road for you. I hope the Ibrutinib does the trick very quickly.

Cx

Hi Mick

I started Ibrutinib the first of June. I had a couple of minor blips but overall it has been wonderful. So glad to have my energy back.

Best of luck. Keep us posted.

Pam

Great news!! Good luck!!

I am so pleased for you and I hope it acts quickly for you as it has for others. Joy

Ibrutinib shrunk my nodes within 2 weeks but my blood counts didn't start dropping until I added Venetoclax. But I think they would have given time. Hope all goes well for you and that you get your life back. It has helped so many people and I hope you are one of them!

Paula

Great news. We’re so pleased!

Fran and Paul 😉

Hooray!! Great news for the good guys....Husband started in April, and his numbers are trending toward normal....lymph nodes have shrunk to normal....some minor side effects, but so far so good...Best wishes for a great journey for you....

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