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
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Mick491
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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.
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.
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
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.
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!
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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