Hubby is in remission but still needs to take ... - CLL Support

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Hubby is in remission but still needs to take his A&V for an additional 8.5months.

spi3 profile image
spi3
19 Replies

Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax for the remaining cycles (8.5 months more) there will be absolutely no CLL in his bone marrow. He also stated he hopes that my hubby will be in a long and deeper remission.

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19 Replies
CoachVera55 profile image
CoachVera55

That is wonderful news, congratulations 🎉🎉How long was he on this combination therapy so far & how well is he tolerating it??? Also did you start here after how long of a W&W period???

spi3 profile image
spi3 in reply to CoachVera55

My hubby got seriously sick in Dec 2021 (at my mom's funeral and after he had his 4th COVID shot - I think this brought on his severe CLL) - we didn't find out what was wrong till mid-feb - they referred us to Dana-Farber who immediately put my hubby in a study 2 March 2022 starting with Acalabrutinib. Then, the next cycle, my hubby started obinutuzumab IVs, and last June 2021 (father's day), he started with venetoclax. He was instructed to drink 3 liters of water a day. He has no side effects. I call his Acalabrutinib and Venetoclax his Angel warriors killing his CLL. I'm praying for the same for everyone who takes immunotherapy treatments.

Mystic75 profile image
Mystic75

That's great news!

spi3 profile image
spi3 in reply to Mystic75

Ty - prayers truly work

craterlake profile image
craterlake in reply to spi3

AMEN !!! thanks for the wonderful report ...😊 blessings to you both ... james

spi3 profile image
spi3 in reply to Mystic75

Ty and I'm wishing the same for you too

spi3 profile image
spi3

Ty

How good read this. It certainly is encouraging for us all. My consultant told me that I could consider myself in partial remission. I take Acalabrutinib but she said if I stop then it is likely that my white cells will increase again. I feel really well, in fact I am thankful that I haven't actually felt ill ever, I just developed raised lymph nodes in my neck. God's blessings to you both. x

spi3 profile image
spi3 in reply to kitchengardener2

I'm so glad that you too are handling the acalabrutinib very well - they too are your warrior Angels - ty for your kind words and praying for you too

Stamphappy profile image
Stamphappy

So happy for both of you!

spi3 profile image
spi3 in reply to Stamphappy

Ty

Catnap7 profile image
Catnap7

Yay so happy for you! My Angel Warriors were Ibrutinib and Venetoclax I did do2yrs on this combo and got total UMRD one year in ..it was a two year trial and I stayed on it My trial ended 2 years plus 6 months ago Yesterday my doctor said my blood work was totally BORING as I’m sure yours is also Love BORING CONGRATULATIONS CATNAP7 🐈🐈

spi3 profile image
spi3 in reply to Catnap7

Awesome and right back at you! I never thought I would say this but "boring" is the place to be! So happy 😊 for you too - praying for you too for a long remission

SKINOW profile image
SKINOW

Are you in a study? how did you get A and V

spi3 profile image
spi3 in reply to SKINOW

Yes we are at Dana-Farber in Boston

SeymourB profile image
SeymourB

spi3 -

It's so heartening to hear these results!

Will there be another BMB at the very end?

Are they doing ClonoSEQ for MRD?

=seymour=

spi3 profile image
spi3 in reply to SeymourB

He's in a study- tons of tests and yes BMBs - they numbed the area in his back- and he did fine - he is negative MRD - taking meds to obtain a deeper remission for a long time

SeymourB profile image
SeymourB in reply to spi3

spi3 -

I'm in a trial, too - at M.D. Anderson - Pirtobrutinib, Obinutuzumab, and Venetoclax. I'm getting MRD testing via both Flow Cytometry and ClonoSEQ at end of Cycle 4, 7, and 9, which is the end of the trial for those who achieve uMRD. If not, it goes on through Cycle 13.

=seymour=

spi3 profile image
spi3 in reply to SeymourB

Yes and hoping you too are so successful

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