Hi Friends,
I just posted a personal reflection on my blog bkoffman.blogspot.com about the generous souls that actually give their blood to help keep me and others going with CLL and its auto-immune or infectious complications.
I might not be here today if not for the timely administration of some IVIG many times some 8 and 9 years ago.
Stay strong
Brian
Thank you to the generous souls who gave of themselves for Doctor Koffman. I'm glad you're here Doc and doing well I hope.
Jeff
Jeff,
I am doing well, in a deep partial remission.
Stay strong
Brian
Well said! We and thousands or millions of people throughout the world should be eternally grateful to those who give of themselves. Without donors of blood and other tissues many of us would not be here.
Personally, I am grateful to the anonymous life savers whose blood cells I received when I was so ill during my chemotherapy.
Please keep giving. You are needed so much.
Jeff
Thanks.
After 65 donations of B Neg's finest, I was dropped like a stone in 2010 after my diagnosis, here in the UK.
I also have been removed from the organ donor register.
Now coming to the end of my 19 month run on Ibrutinib as I've been told that Pharmacyclics want to close the study (RESONATE-2) in May and get everyone onto the extension study, which I have declined. It would involve another 7 or 8 full body CT scans, which, as the last one showed that I am in 'effective CR (Unconfirmed)', I feel are unnecessary.
It'll be interesting to see what happens after stopping Ibrutinib.
Mike
Mike,
Why not try and receive the ibrutinib outside of the trial to avoid the scans?
This sounds like a big gamble. Be well.
Jeff
Thanks Jeff. Depends whether the study is seen as a first treatment. If it is then that's what I'll do.
