I haven't posted in quite some time : however treatment day is getting closer. Quickly, I was started prematurely on acalabrutinib in Oct 2022 by a Dr in North Carolina where we spend our summers. Would never of happened if I hadn't gotten Covid in July. My specialist at Moffitt and my Dr in Naples stopped the treatment after 5 weeks as my ANC tanked to 0.14. and my WBC was 3.6
My blood has returned to where it basically was a year ago in March except my platelets are down to 90 from 123. When my Dr feels it's time to treat we will redo my bone marrow biopsy and then select a treatment plan. For now we are doing blood tests every 6 weeks.
The two options being considered are: zanabrutinib or the Venetoclax+ Obibutuzumab protocal.
My Dr said it won't be calquence .
I think the big difference is if you do the venetoclax + you may be in treatment for a year but then you may be in remission for 2-3 years before having to start another plan? That vs being on Zanabrutitnib indefinitely.
Any insight into those alternatives or others would be appreciated. Thank you
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Rico49
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I did a time-limited treatment (IVO in a trial). It has been lovely to be off the meds. I am not sure in this day and age that anyone can predict how long remission will be. So much of CLL seems to be related to your own situation, however I would guess you might have a much longer remission than 2-3 years. I am sure others will have better data for you.
In not in treatment yet, but my CLL specialist tells me he will recommend V+O for 15 months and estimated 4 to 7 years remission in my case. He expected that when I come out of remission that we could repeat the same treatment 2 or 3 times. If. V +O loses effectiveness, then he would put me on zanabrutinib or something similar. I am Unmutated q13 deletion.
Since the therapy uses two drugs you start on the first drug for 3 months before they add venetoclax to the mix for another 12 months. This is supposed to be better than venetoclax by itself. There are a variety of drug options to start you on before the venetoclax.
I can't answer to how long remission will last because I am just half way through. My final Obinutuzumab treatment is tomorrow morning. I can say the treatment itself has been super easy for me. No side effects to mention and I feel great. I would definitely consider this route if I were you.
My hubby is getting to the end of his v+o treatment. (May should be the last). He missed exactly one day of work. His hematology oncologist reports that none of his patients using v+o have yet had to return to treatment. He has been using this for 4 years. Now, this is not a huge city, he is certain to have had some selection process and we did not discuss worse outcomes, but we interpreted that as very encouraging.
If money wasn't an issue I would go with Zanubrutinib. Those who take it seem to be happy with it. Looks like V plus O is more troublesome at least in the beginning.
I'm 6 months in on v&o. Yes, it's more work and monitoring at the beginning...they have to watch your counts carefully as you ramp up each medication. But once you're there, pretty routine monitoring. I've had few side effects and am hoping to get to umrd and thus a treatment vacation!
I chose V&O because it was time limited just like my B&R treatment. I am 7 months into V&O and whereas first O treatment was very rough, I am glad I stuck with it as V&O as been very uneventful. I did not want to take an inhibitor drug for lifetime with possible lifetime of fighting adverse effects. Blessings.
There are studies starting/already started, on a *single year* with *2 agents* giving durable remissions. My understanding is that the first one with Venclexta and Ibrutinib, is giving the same PFS as the 2 year Venclexta and obinutuzumab (Gazyva). So there's early data that "being on a single BTK ongoing" may be phased out, or at least not a first line therapy recommendation in the future.
If costs are a problem, I am told the Venclexta/obinutuzumab versus Venclexta/acalabrutinib trial *pays for the drug*. Not every study pays for drugs already on the market. You could always drop out if randomized to the acalabrutinib arm, and did not want to risk a re-challenge. Or perhaps there is some way for you to be approved for the V&O arm in advance. If the study is attempting to match patients, it may be possible (not going to explain what the process of "matching patients" is right now).
There's some discussion along the lines of "some CLL variants will not be curable, if a "cure" for a large number of people is found. It would be better to treat for a short time to drive the disease down, pause treatment, and possibly resume the same treatment years later to drive it back down again. If you leave the patient on the treatment indefinately, instead of pausing, the variant may become resistant to the drug and you lose that treatment option. For younger people getting this diagnosis, this may be especially important, since there aren't dozens of drug therapies available."
There are studies with venetoclax, a BTK, and/or other drugs, if one of these are near you and you are interested. Not all involve acalabrutinib, if your docs think you should avoid that particular BTKi.
Thanks. Moffitt and my Dr lean toward the two drug approach as several people have mentioned. Take the two drugs for a year- then get a break and go to zanubrutinib or by then there may be something else.
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CLL and now very elevated Monocytes
Cll treatment 
Disappointing day...
CLL in treatment and possible long Covid and managing isolation
