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

CLL Support

23,323 members40,025 posts

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.

Written by
spi3 profile image
spi3
To view profiles and participate in discussions please or .
Read more about...
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 toCoachVera55

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 toMystic75

Ty - prayers truly work

craterlake profile image
craterlake in reply tospi3

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

spi3 profile image
spi3 in reply toMystic75

Ty and I'm wishing the same for you too

spi3 profile image
spi3

Ty

kitchengardener2 profile image
kitchengardener2

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 tokitchengardener2

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 toStamphappy

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 toCatnap7

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 toSKINOW

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 toSeymourB

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 tospi3

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 toSeymourB

Yes and hoping you too are so successful

Not what you're looking for?

You may also like...

MRD Results

My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his...
spi3 profile image

Is there a video regarding remission for CLL?

Hello, Is there a video regarding remission for CLL? I am interested in knowing what remission is...
Lavinia-Blue profile image

recent immunotherapy trial results

In reading the recent immunotherapy trial reports it has me worried and it makes me wonder if my...
spi3 profile image

What is the New name for cll in remission

I was told that as long as I was in remission they do not call it CLL. What is the name?
plaingal58 profile image

Blood Negative MRD

History: My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was...
spi3 profile image

Moderation team

See all
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.