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CLL Support Association
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Successful start of second arm of Acalabrutinib, Obinutuzumqb, Venetoclax Trial

One month on Acalabrutinib knocked my nodes down to less than half and my WBC from 82,000 to 62,000.

Started the Obinutuzumqb arm yesterday with the 1/10th dose, with side effects only from the Benedryl. From yesterday to today, on only 1/10th the dose, I went from a white blood cell count of 62,000 to 17,000 in this morning’s test. Normal range is in the high 9ks on their scale. I got the rest of that full dose today with no side effects! They think I’ll be in the normal range when I get back next Thursday! Neuts up a little (probably from steroid prophylactic). Globulin counts up a little. Neck node down to almost nothing in 24 hours! Scream-singing to “Afterglow” by Genesis on the car ride home from Dana-Farber. Loving life!!!

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Hey Circlesaba!!!

I am sooooo happy to hear your trial is working out well for you.

Genesis was way better after Peter Gabriel left.....but Peter Gabriel still rocks.....can you believe this one came out in the late 70's? It was ten years ahead of its time.....none of that disco sound but all 80's sound....I was floored when I found out this was not 80's music...

Scott

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That is great news! I'm glad things are moving in the right direction. Hopefully these first rounds will smooth the way for the Venetoclax leg.

Keep enjoying life!

John

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Amen, John. Don’t want to give that cancer bomb too much to play with!

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Thanks, Scott!! Glad to hear you’re a Genesis fan! Don’t get me wrong, I would have rocked out just as hard to “Watcher of the Skies” or “Supper’s Ready.” Listening to “Solsbury Hill” right now, via your link. Thanks! “You can keep my [dead cancer cells] it’s time to take me home.”

Glenn

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What I really like about that song, Solsbury Hill is it is about changing your life for the better...was the first song he released after leaving Genesis. I figured it had to apply to you as well nowadays :)

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Most prescient! It applies to me very deeply right now. In the past three days, I’ve been well into my biannual deep dive into the Genesis catalog. I guess we “go back home” when we need it the most, right? He left, to a large extent, because even as a young man in his early 20s, even at the peak of their initial run, he had to return home to be with his wife and their sickly newborn. We’re all returning home, here, with each other, in a way. That’s how it feels to me. So glad I found you and this community, Scott.

Glenn

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Great news I am so happy to hear the trial is working for you!

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Thank you, Maryann! :-)

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Fantastic news! Blast that great music (I love Genesis, and Peter Gabriel's Solsbury Hill is a very special song) and sing away!

Debbie

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Thanks, Debbie! “Reasons to be cheerful (and rock) are one, two, three.”

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Great news! Great song!

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Thanks, fell!!!

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So happy for you☺👍

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Thank you, my friend. I predict the same joy from you whenever your treatment time comes. The meds are freaking amazing.

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Fantastic news! So happy for you!

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Thank you! I hope others are responding well, too. I haven’t heard much yet from others in this trial. Anyone here?

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Hello Circlesaba

Did you have to be 17P deleted to get into trial? Thanks

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High, Big_Dee. Definitely not because I’m not. I am IVGH unmutated, though. Not sure about requirements. I have the info at home and will check when I get back.

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Great news! Do you stay on acalabrutinib when the Venetoclax is added?

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Thanks! Yes, that’s the plan.

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Sounds like a powerful combo. Keep us updated.

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So glad for you!!

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Thank you, Bettina. I hope this trial produces really great and hopeful results.

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Great news so pleased to hear it. Keep singing.

Ann

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Thanks, Ann! I think my voice is getting a little better, too. I lost vocal quality when my neck got bulky.

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Looks like it good news all round. Well done.

Ann

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That is great news Circlesaba! I started the third treatment a week and half ago. My WBC has dropped from a month ago high of 306k dropped to 65k this past week. Since it is still high they had me in the hospital for three days when I started Venetoclax, then again three days when they increased it from 20 to 50 mg. Next Tuesday increase to 100 mg. It will be out-patient, have to stay 6 hours to have blood checked, then next day for 24 hour check. So far no problems, still feel great. I do have 17p/TP53, unmutated, complex karotypes too, so am really pleased with the progress. This is frontline treatment for me. Again am so pleased with your results! Yeah!!!

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What a drop! That was on your first two cycles of Venetoclax? Look at you go!! I’m so glad you feel great. I just went out and played 18 holes of disc golf today!!! Fatigue? Gone!!!

It’s frontline for me, as well. I’m only unmutated. From everything I’ve been reading, we should each be getting great responses out of this. I hope for everyone we do.

I see that you’re at OSU. Glad to know they’ve got Acalabrutinib up-front. They surely do know this combination by now. You’re in great hands. Keep killing those cells, you!

Glenn

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