MRD question

[Gardengirl44]

quick question… I’m in a trial- taking V exclusively and completed Obin phase . Finished cycle 7 and was tested for MRD. I had 9 cells which sounded pretty great . However I think I will have to stay on pills until cycle 12. Have t gotten official word but am planning that this will be the news. Any of you been in that place ? Words of wisdom?

[Poodle2]

I think that regardless of the result, you would stay on V until the end, it's a fixed 12 month therapy. It seems that most people who achieve uMRD achieve that in the second half of the treatment.

Even though you are saying that you are in a trial, did the trial mention you would go off the medication at some point?

[Gardengirl44 in reply to Poodle2]

yes . Now or cycle 12. ❤️

[Poodle2 in reply to Gardengirl44]

Ok. Well, you will get another 6 months then 🙂at least the Obi is out of the way.

[Gardengirl44 in reply to Poodle2]

ain’t that the truth !

[mickimauser11]

they probably retest MRD again by continuing you can achieve a deeper remission

[Michaeljohn50]

So far, so good.

My O+V treatment started on March 1st 2020 and was complicated by the pandemic. It was completed in the third week of April 2021; I still recollect hearing the magic "uMRD" comment from my haematologist. Unless there is a compelling reason to stop taking Venetoclax early I would continue with the treatment. Do nothing to jeopardize the chance of achieving uMRD, in my view. I will have my 6 monthly bloods in a few weeks, hopeful that my uMRD status is re-confirmed. It is not the only measure or indicator that is important in our lives but it is a great box to tick!

Best wishes, Michael

[DinosaurDad]

Here in the US I'm in a trial which will test for umrd starting cycle 7. If reached they will stop v&o as early as cycle 9; otherwise continue for 12 cycles. Wishing you luck!

[HopeME]

Hi Gardengirl:

We are all unique and as such inflicted with variations of this disease. Further, it seems different CLL doctors/Clinical trials are tweaking the frequency of Venetoclax in an effort to discover the optimal dosing schedule.

I will have a BMB in cycle four (this is not typical rather it was part of the SAVE trial I wrote about last week) and in cycle 12. My understanding is if I am mrd negative at the second BMB I will stop Venetoclax. If I am not mrd negative, I will continue on through cycle 24. It is expected that at cycle 24 I will stop Ventetoclax regardless of mrd status as resistance can develop with Venetoclax. That being said, I recall someone writing on this forum that they had been on Venetoclax continually for 7 or 8 years and while their CLL did not show mrd status (it was similar to the level of cll your last test results showed if I recall correctly) it hadn’t progressed. This member felt she was one of the longest, if not the longest, patients on continuous Venetoclax therapy.

Venetoclax is an amazing drug but the doctors are still working to learn the optimal way to use if for each patient. It is a complex puzzle but a puzzle that is starting to come into focus.

Best of luck to you!

Mark