CLL Support Association

Update for followers

I note I have 11 followers and I'm surprised I have not provided an update for quite a while. I started Obinutuzumab and venetoclax in march 2016 with 75 percent CLL in my bone marrow aged 47. I had some early challenges but by August I had only 0.08 percent! Mrd positive. Next bone marrow biopsy might show Mrd negative? In the five years previously through fcr bendamustine ibrutinib I never got below 40 percent. Thank you to prof gribben and the nurses. Thank you to all on this site who have chipped in with really important advice when needed! Including pointing out the trial I'm on. I'm on the same trial as debinoz. Love to all Corin.

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As I am one of your followers. 🎉

Jeff

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Cheers Jeff.

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Brilliant. Really happy to hear your good news Corin. Doing another marathon?

The Prof got me into complete remission too.

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Err no. Just golfing and swimming. Still on venetoclax septrin aciclovir and lansoprazole and every four weeks immunoglobulin infusion. What you up to?

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Everything back to normal but better. Pick up bugs quite a bit but manage to shake them off ok. Really pleased for you Corin.

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Brilliant news Corin, thanks for sharing, it gives hope to others. Long may it continue.

Marc

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Excellent news good for you

Jules

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Many thanks for the update Corin, which is excellent news!))

Best wishes

Jack

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You deserve this. Good news.

Sue

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Fantastic news! Did you begin the 2 drugs together or sequentially? Best wishes for continued success...you are a pioneer for us.

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I'm on a trial. Last march I started with Obinutuzumab and that alone was challenging. That was then infused once per month six times. Venetoclax started slowly four weeks into the program but my liver struggled so I had three weeks off before restarting thank god! I was worried about failing the trial. In short I spent most of march and April in hospital including a week of Rsv pneumonia early on. In may I joined the local golf club and since walk c 5 miles every day almost. I'm 48. There are four others in London on this trial. I may be Mrd negative soon. Deb ahead of me is. Two others have not done as well. Now I'm in hospital two days per month. One day for tests meeting and drug collection. One day for immunoglobulin infusion. I do feel better for the latter but as we all know these days in chemo wards have to admit kill my spirit. Actually my liver is struggling just now but I have gone no or low alcohol and eating good stuff. Will be interesting next test. Cheers newyork8 and followers. Corin

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