Hi friends,
Well, it’s been a great 14 months on the Dana-Farber Acalabrutinib, Obinutuzumab, and Venetoclax trial. I’ve been MRD- (blood and marrow) since month 7 and I’m going in tomorrow for my final bone marrow biopsy.
If my last node is down by 1mm over my last staging, then I’ll get to decide about staying on the Acalabrutinib and Venetoclax or stopping them both. My current leaning is toward coming off. Thoughts?
Glenn
Great news about your trial results, but tough decision about stopping treatment. Has your doctor discussed what the plan would be if you stop and the CLL becomes active again? I think that that would be my first question if I were in your position.
Timely question for me to ask. Thank you! We have discussed it, but now it’s real, and I need a refresher!
My hunch is that you probably want to stay on the drugs for a bit longer than it takes to get to MRDU with a hope that the last few cells are killed off. So in FLAIR for example I think it’s something like if it takes you two years to get to MRDU you take it for another two years then stop. But less if it takes less time to get to MRDU etc. (Sorry I may have that wrong...). But you get the idea. Finish off the last few cells by all means but don’t just stay on the drugs for ever i guess may be one option. But if you are in a trial then the trial probably defines it for you.
Hi Glenn
What do the doctors say about staying on or coming off the drugs? Is this treatment so new with no history of outcomes that it comes down to a coin flip call that is made by the patient? I would think that even without history the doctors would have some leanings one way or the other.
I would be asking about the statistics in regard to the time of relapse on Venetoclax in relationship to an acquired mutation as talked about in the link below.
I would also want to know if there is evidence that stopping Venetoclax (I am not sure there is enough info on Acalabrutinib yet) and starting it again is better than being on it for long-term in relation to relapse.
These may not be answerable, but at least the Dr. may have enough experience to give you a good feel with his thoughts on them.
Is there a way for you to be tested for the acquired mutation at this point?
medscape.com/viewarticle/90...
Also, how close will you be followed if you stop the therapy?
Best wishes for some clarity in that very important discussion.
Staying on drugs drives resistance according to Dr Jenifer Brown. I’ll try and find the clip.
I guess it’s all up to the trial, your trust in your Doc and you Glenn.
Please let us know your decision.
Jeff
Your article spells it out pretty well. If you can be tested for the resistant clones snd are negative, you can be rechallenged again later with the Venetoclax.
The evidence for coming off the Venetoclax is pretty compelling. The Acalabrutinib is another story.
Jeff
oncpracticemanagement.com/i...
the above is a clear statement in regard to probable best time for stopping V to avoid the resistant mutation.
Cllady01,
That article was for Venetoclax monotherapy? I wonder what the incidence is with Glenn’s combo. I’m hoping that the obinutuzamab and Acalabrutinib killed them off.
Jeff
I take it to be Venetoclax and I would imagine at this early time in combos, it would have to be seen as a caution. There is no evidence (that I know of) that the combo makes a difference--time and trials will tell.
come off the drugs , let 's see if this combo is the curative solution
Congratulations! It is great that you have a chance to make this choice. Much better than being between a rock and a hard place.
One thing I would consider is whether you are experiencing any negative side effects from trial drugs. You are a pioneer here and so statistics aren’t likely to help much.
I wish you the best of luck and am sure you and Dr Brown will make a good choice.
John
Whichever route you choose i want to wish you the best of luck Glenn🙂.
Once I find a doctor whom I am convinced is qualified and has my best interest at heart, my standard question in these scenarios is "what would you do if it were you who had cll and were making this treatment decision?"
I would follow the doctor's advice unless he/she said it was a coin flip. If it s coin flip, I'm getting off the drugs.
As we all know with cll, everyone is different so the advice for everyone might not be the same. My sense is that in most of these novel agent combo trials, the goal is to get us off the meds and in durable remissions. If some folks on FCR can have 20 year remissions, who is to say we will not see remissions like that with the new drugs?
Or even longer. I honestly think that AVO May turn out to be curative for some patients. No guarantees of course and we won’t know for sure for like 30 years or more. But they say if you remain MRDU for a few years the chances become higher and higher that it will never come back.
Jeff,
I had a friend who always asked the doctor two questions.
1) What would you do if it was your father?
2) Did you love your father?
😝🤣
He also said that a young man asked him “who would want to live to be a hundred years old?”
My friend replied, “Go ask a 99 y/o”
Glenn, I thought you might like a little humor to your post
Jeff
Glenn !!!
I am so happy you have reached that point already!!!! You are 3 month ahead of me. You ask a difficult question and I am not sure what the study protocol dictates if you entirely negative which I suspect you will. I as MRD 0.02% in the BM at 7 month and I will ask once I get to the point you are already if they test MRD-6 in blood and BM. That would give me more confidence to stop the medication altogether. Again I am not sure if this is planned according to the study protocol. In any case I believe that your results having reached MRD-u so early during therapy is outstanding and likely translates into a very long remission if you stopped therapy at this point.
All the best
Heiko
Lily_Pad_Master,
Is this an option offered by the trial at this point, or is it personal consideration?
Not that it matters that much, because today presents new possibilities, but I would weigh it some in accordance with your original objective.
Most definitely a better contrast to the decision for entering treatment. I am glad you at that place.
JM
Finishing line for Pirtobrutinib (Loxo) & Venetoclax combination trial.
Majic trial arm \"A\"
What the BMB Result Said
MRD Negative in the Bone Marrow - clinical trial update
