New Years Good News: Had the best... - CLL Support Assoc...

CLL Support Association
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New Years Good News

Had the best appointment I've ever had with my CLL expert. Every single blood number is in the normal range, no enlarged lymph nodes, no enlarged or bad anything else. Everything is stable and I feel great. Woohoo!

I'm one of many "every patient is different" cases. Mine involves first-line treatment in a clinical trial, spectacular failure on idelalisib, relapse, spread of CLL to the central nervous system (complete with seizures and permanent partial blindness), good response to brain chemo for the CLL, and subsequent intolerance of ibrutinib.

Now, wonderful success with acalabrutinib. No adverse side effects to speak of.

All is good! When I was first diagnosed, everyone told me that blood cancer research was moving fast and that new and amazing treatments were on the way. I didn't believe them at first. Now I do!

There's good hope for everyone. Happy New Year to all!

Geoff

Washington DC

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What a fabulous start to a New Year! I am delighted to hear such positive news. Definitely time to celebrate, New Year/ New Life 🎉 👍😘

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I'm so happy for you Geoff, Happy New year👍

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Wow, Eagle, you are soaring now! What a horrible trip you have had with all the treatment failures.

And it is so good to know you are now doing so well. Thank you for the update.

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Thank you for sharing. I needed to hear your story now.

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Great news!

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So Happy for you! Continued Good Health ! Enjoy this gift!

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Wonderful New Year News. So happy for you and grateful for this kind of news. 💕💕

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Fantastic news! Congratulations on making it to officially boring patient, but you certainly didn't take an easy route to get there!

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What an uplifting post! I am so happy for you. Happy New Year!

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Hi Eagle

Its a great news and big relief to know that wonderful drugs are in pipeline.

Any idea other than US where else Acalabrutinib is available ? Thanks in advance

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No, sorry, I don’t know its availability elsewhere. It’s approved in the US only for mantle cell lymphoma but not CLL. Our FDA is expected to approve it for CLL later this year. It’s now available only in clinical trials or when prescribed off-label.

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Thanks Mr. Eagle

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Another positive story for 2019.

Thanks for letting us all know.

Sue

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That is great news and a lovely start to 2019! Happy New Year! 😀

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That's great news eagle, long may it continue, God bless, Terry

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Whoa...after that bumpy journey you certainly deserve this good news. I'm very happy for you and wish you all the very best for this year and many more years of wellness.

Beattie

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Great news Eagle well done.

Ann

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BLESS! So happy for your good news!! Just hearing that can’t help but to make you feel better! Continue your up- swing!

Mimi in GA

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Great news Eagle! It's always good to hear success storries and specifically after such a rocky journey. Here's to continued good health for you. Happy New Year!

Chris

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That is great news! I thought that particular drug was used for mantle cell lymphoma. I did not know that they are prescribing it for CLL as well?

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You're right. The only ways to get it now are via a clinical trial (NIH has one and there are others) or prescribed off-label. I'm the latter because I have failed everything that's currently approved for CLL except venetoclax. My CLL expert (Dr Cheson) thought that acalabrutinib was the better choice than venetoclax because ibrutinib was controlling my CLL very well -- but I couldn't tolerate it (internal bleeding and massive lower GI issues). Turns out that as a second generation drug, the acalabrutinib is controlling the CLL every bit as well as the ibrutinib did but so far, no side effects at all.

Acalabrutinib is supposedly on track to be approved for CLL by the FDA later this calendar year. Fingers crossed! It's good stuff in my book.

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💃 what wonderful news.

Pam

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Hello Eagle5327

I think that is great news. Your success on acalabrutinib was one of the main reasons I am now getting ready for third cycle of B+R because I felt if I could tolerate the B+R and kick the can down the road until relapse, acalabrutinib would then be approved with out as many side effects as ibrutinib. Thanks for sharing the news.

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Bingo! Great strategy. I did B+R in 2014 as part of a clinical trial that included idelalisib. I failed out of the idelalisib pretty dramatically but finished all six cycles of the BR. Got a very good partial remission.

My remission lasted only eighteen months although lots of people get longer. That eighteen months was critical for me -- during that time, ibrutinib came online and was then approved. Clinical trials advanced for the second generation of it, acalabrutinib and it's now approved for mantle cell lymphoma. Even though I could't tolerate ibrutinib I'm loving acalabrutinib. And it's working like a charm.

None of that would be possible for me without the intervening eighteen months I got from BR. May similar advances happen during your remission! I'll bet they will. Best of good fortune and good health to you!

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Fabulous news. Chuck also had good news a few weeks ago; all in normal range EXCEPT white count but it was a great result also. (Chuck was diagnosed 11 years ago and was W & W until 13 months ago. He has been on imbruvica for a year. The first few months were a little bumpy. He had regular transfusions for the first month or two to keep his hemoglobin above 8. It's now at 14. His neutrophils also dropped to dangerous levels a couple times and he stopped the imbruvica for a week or so each time, and those numbers are also back in normal range). Please assure your friend who was concerned about her hemoglobin and transfusions that it is ok...

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