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CLL Support Association
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Good news

I am just back from OSU and my visit with Dr. Byrd. Labs were good for the most part. My blog has more details: bkoffman.blogspot.com

We leave for Orlando and ASH next week. Let me know what burning questions you have for the experts and I'll try to get answers

Stay strong

Brian

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Thanks Doc and keep your great labs coming. You're such an inspiration to me.

Jeff

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I couldn't of said it better, Jeff!

Roslyn

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Hi please can you ask why there is no research into fatigue when it is such a common problem. Many thanks

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These is some. Papers on JAKAFI (ruxolitinib) at ASH this year for fatigue in CLL. Positive results

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An inspiration to us all to stay strong and never give up. Thank you. Peggy.

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Brian,

It is always a pleasure to read your posts…I am very happy that your last visit brought such great results…you provide all of us with CLL both current and accurate information from the best and the brightest in the field. Your energy is boundless and contagious leaving me with a smile on my face! I will think of you as we light the first Chanukah candle and enjoy a latke or two or three…Terry

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Thanks.

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Alone in the wilderness of CLL and faced with the need for treatment I wrote to you for help in making a decision about whether to go down the tried and tested route of FCR or take a chance with the opportunity of a trial of the then new drug in the UK, Ibrutinib, Which you yourself were on. You guided me in that direction from your own experience and since then I have never looked back. Within a couple of weeks I was my old self, all symptoms had gone and I was experiencing none of the reported possible side effects. Within a few months my levels had returned to normal allowing me to have that long awaited hip replacement turning me into a new man, charging around trying to make up for lost time and putting three years into one.

Thank you Brian, there are many here that have benefitted enormously from your blogs making darkness visible.

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So glad to hear your are doing well. You made my day. How long were you off the Ibrutinib for the hip surgery? I have been postponing having both knees replaced.

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Safe journey Brian. Hope you have plenty of tissues with you, and soon feel better. I'm sure the germs have little spies so they can pick absolutely the worse time to strike.

Thanks for doing all you do .

Bubnjay1

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