I have been fighting cll/stage 4 for seven years with little success. Have had all standard chemo and have been in two clinical trials (ibrutnib and ABT199). The ibrutnib worked great for about a year and a half. When it failed it was fast! Then I tried ABT199 which helped save my life, but was short lived,only four months.
I saw my doctor Wednesday and I am scheduled for bone marrow transplant at the end of this month. I am so excited! The match has been found and has agreed to donate. I feel so thankful to this person that is stepping forward to help me and they don't even know me. It shows that there are people that care.
I don't just have cll/stage 4 but have a p17 deletion plus because of all the chemo I have had I have mutated blood cells. I feel great and my counts are not bad considering where I am at! I am very fortunate to have great doctors and a wonderful support system of friends and family, but most of all I have faith. God will be walking with me every step of the way.
Wishing you the very best of success with the transplant Stitches. You've certainly been through the mill but it's clear that the superb support, excellent doctors and your faith has kept you positive and buoyant. Not forgetting the generous donor who has made this possible! Long may that continue!
Wishing you well. Please let us know how you progress.
my husband had a stem cell transplant in feb 2015. summary: lifesaving but hard.
he also had a mutating form, picking up new ones, and our doctor felt staying on ibrutinib was risky for him. it got him to transplant with relatively good blood cell counts.
transplant has saved him, but there are hard times. look back a couple of weeks to see improvement, not a day or two. expect a long long long long slow slow slow slow recovery - we are almost 5 months out - day 142! - and he has started a very slow taper of some of the immune suppression drugs.
we too are eternally grateful to the stranger who stepped up to donate his stuff-of-life to a stranger.
wishing you a super successful transplant! be sure come here to HU for support any time.
where are you located? we are near Vancouver BC, Canada.
My husband has just had a bone marrow transplant (myeloablative conditioning) and is now at day 25. He also has 17p deletion and was on Ibrutinib for a year before the transplant. He was allowed out of hospital at day 17 post transplant and his doctor said he's had a "dream run" so far. He also managed to avoid getting a fever, infection or mouth ulcers. Of course we won't know until day 100 if it has been successful so fingers crossed. Just wanted to wish you all the best with your transplant and hopefully you'll also have a "dream run".
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Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
Update on my participation in an ABT199 clinical trial 
MRD results
What if venetoclax and/or ibritinib stops working? 
Transplant in sight
