Not MRD- yet: Although a full remission due to... - CLL Support

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Not MRD- yet

Yvbb profile image
Yvbb
13 Replies

Although a full remission due to the excellent synergy of Ibrutinib (9 periods) and Venetoclax (6 periods) there is still a level of approx 10 percent of cll disease in my pb. Ofcourse I hoped to be one of the succesful cohort Dr. William Wierda presented on Asco 2018; more than 70 percent seems to get to this impressive result within a few months. I will have another evaluation after period 12 and 15. So MRD - could be in reach for me too. I had to stop taking Vtclx for a week and reduce the dose for another week due to neutrophelia in period 9. Fingers crossed🤞🏻.

Yvonne

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Yvbb
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13 Replies
fell profile image
fell

You’ll get there, Yvonne! 🙏

I’m on the same trial (finished my ramp up to 400 mg of V on Wednesday )

Best,

Fell

Emcee1 profile image
Emcee1 in reply to fell

Fell

I am finishing week one of Venetaclax any side effects at full throttle?

Mike...

fell profile image
fell in reply to Emcee1

Hi Mike, I replied earlier, but it looks like it didn’t go through. The 400 mg is a little bit challenging. I am experiencing nausea and a lot of fatigue. I have decided to change the timing from morning to night, so I am slowly moving up the time when I take both medications until I get to about 9:30 PM for Ibrutinib and then 10:30 pm for venetoclax. I think I’m in the minority, most people tolerate it well.

Emcee1 profile image
Emcee1 in reply to fell

Thanks. I will post my results as well for those that follow. Again, thanks for the heads up!

Mystic75 profile image
Mystic75

Hang in there Yvonne! Lot's of reasons to be very positive!!!

Fingers crossed for you!

D.

pkpayne profile image
pkpayne

Yvbb it looks like you are headed that way - to MRD! Great news! Dr. Wierda is also my doctor and I hope I make to MRD as well although I'm not there yet. Just had my 4th BMB but don't know the results of it yet. My fingers are crossed - for both of us! Keep on keeping on.

Paula

fell profile image
fell in reply to pkpayne

Wishing you the best, Paula! 🙏

pkpayne profile image
pkpayne in reply to fell

And you too fell!

Paula

yoniboi profile image
yoniboi

Good luck guys. You're leading the way for the rest of us there. Great to hear how you're getting on!

BettinaB profile image
BettinaB

Keeping my fingers crossed for you Yvbb and for everyone else too, of course. You are courageous, altruistic and generally to be admired!

Yvbb profile image
Yvbb in reply to BettinaB

Thank you so much for the support. I read this somewhere: it is not all about the medicine, it is the luck you can have and the support that can make the difference.❤️

Emcee1 profile image
Emcee1

All the best! Keep posting please as I am a few months behind you and I am sure there are others as well! We like good news!

Sending prayers!

Mike

closh profile image
closh

Hi Yvonne

I was one of the first 14 on the trial and wasn't MRD- at your stage either. After the 15 month evaluation though, I reached MRD- "undetectable" as did 11 others (12 from 14). It takes a little while to keep hammering on the toughest of those nasty little CLL cells.

Graham

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