MRD Results

[spi3]

My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year on Venetoclax and 1.5 year acalabrutinib. The Dr stated that since he had the aggressive CLL (17p depleted and TP53 muted), he wants my hubby to get in and to stay in a longer and deeper remission. Has anyone else experienced this? PS Hubby has come a long way, this community has been wonderful with all the information and care given and I truly want to thank you all for being a lifeline, giving hope, and being a blessing.

[Mina2021]

Wonderful news! Thanks for sharing!

[spi3]

Ty - it's a frightening task but I wouldn't have it any way.

[MrMidnight]

I am 17p deleted and after two years on Venetoclax a BMB last March showed only 0.002% infiltration (20 parts per million). So it's undoubtedly worth pressing on to flush out even more pesky CLL cells.

[spi3 in reply to MrMidnight]

Thank you so much sharing - I guess I am over worrying

[MrMidnight in reply to spi3]

As far as I know, two years is the standard length of treatment for Venetoclax (although it may be shorter when allied to a BTK inhibitor like Acalabrutinib). But there's no one-size-fits-all in treatment.

Personally, I wouldn't worry about your husband continuing with the treatment. If it's working, all good!

It took me a long time to stop fretting about treatment until I adopted the position: "If the docs aren't worried, then I'm not going to be worried either!"

[spi3 in reply to MrMidnight]

Ty for sharing and I'm so happy for you too 💓 and I love your philosophy too

[dave20]

Hi Spi3,

Congratulations on the good news.

I was in the similar situation like your husband, i got my uMRD after 17 months acalabrutunib and 14 months venetroclax . My Doctor wants me to complete the 24 months protocol as I was TP53 mutated and 13q deleted .

May i know how many more month do your husband needs to continue with the medicine ?

Regards

Dave.

[skipro in reply to dave20]

Congratulations

Good news is soooo good

Skipro

[spi3 in reply to skipro]

Ty so much - you know I'm praying the same for you too

[spi3 in reply to dave20]

We don't know- probably 6 months? Once we know I will let you know

[Mandy56]

great news. So happy for you both.

[spi3 in reply to Mandy56]

Ty so much

[spi3 in reply to Mandy56]

T y so much

[lankisterguy Volunteer]

Hi spi3,

-

What your husband's doctor is proposing is becoming a common practice among our USA CLL expert doctors, especially among the more difficult to treat genetic profiles like your husband's.

Just yesterday I viewed a 2 hour summary of the ASH 2023 meeting that mentioned the concept a few times. see: lrn.peerview.com/150208725_...

The hypothesis is being tested in a few clinical trials, since UK and Europe are only using fixed duration treatments with 2 drugs. The trials are exploring triplet vs doublet treatment and MRD guided treatment duration, but the leading edge doctors are using it already.

-

Len

[spi3 in reply to lankisterguy]

Ty so much for sharing this wonderful update

[Skyshark]

1.2x10^4 is so close to uMRD4. Not found a similar chart for AV but it's really worth pushing on. It seems to make a big difference on other Venetoclax treatments.

uMRD PFS

[GumboKing in reply to Skyshark]

The chart on the right, Figure S1, references PB in the title. What does PB mean.

Thanks

Paul

[GumboKing in reply to Skyshark]

I think I figured it out. PB is peripheral blood.

[Skyshark in reply to GumboKing]

Yes. There is also MRD in bone marrow. Usually a lower number than reach uMRD in PB.

[spi3 in reply to Skyshark]

Ty for sharing - this gives me so much hope!

[TheaB333]

Wonderful news! Thank you for sharing hope with us all today. 🥰🙏🏼💕

[spi3 in reply to TheaB333]

Always and wishing you the same

[Catnap7]

I didn’t do exactly same drugs as your husband but yes 17p deletion here 13 q and other unfavorables I became UMRD on Ibrutinib & Venetoclax in twelve months or so but continued on my drugs for another year I’ve been off drugs and in a beautiful remission for a little over 3 years now I am really happy I stuck it out and did them for the full 2 years Did this with a lower dose of Ibrutinib I wish the very best for you and your husband I hope he gets into a long remission and his ship keeps sailing

Catnap7 🐈🐈

[spi3 in reply to Catnap7]

Ty for sharing- so happy fo you too💓

[Sanders9]

Fantastic news

[spi3]

Yes indeed ty!

[Wendy328]

Great news!!

[spi3 in reply to Wendy328]

Ty!