How long do most people stay on calquence due to improvement?

[Mackiec1108]

Stopping calquence

[cajunjeff]

Mackie, your question as written is a bit confusing.

If you are asking how long people stay on calquence, the best current answer is that calquence and other similar btk inhibitors are to be taken indefinitely, so long as they work and we tolerate the drug. Ibrutinib is a similar drug and some people have been on it close to ten years now without progressing.

Calquence alone usually does not get people into a hard remission, but some do and some of those people might take a chance and get off calquence. It is also possible some people on Calquence may add drugs like venetoclax to get a remission where they can stop both drugs.

I do not know if that is what you were asking, I hope the answer was helpful to you.

[Mackiec1108 in reply to cajunjeff]

Yes you answered my question. Thank you

[bhayes84]

As cajunjeff said, my onc said I would continue on it even after my blood levels return to normal.

[NoClew]

Mackie, a year ago, I made the very scary decision to stop treatment with Calquence. I took a dose reduction after 16 months due to relentless side effects. I continued to have excellent response even on 100mg. After 3 1/2 years with the support of my team, I decided to take a "drug holiday" which I am still enjoying now a year later. Can happily report that my labs have remained normal, and I feel a whole lot better. Essentially back on w&w, I can give Acalabrutinib another try if/when there is relapse, or new possibilities. DX 2008 (Unmutated, 13q)

9 yrs w&w, then acquired p53 deletion

Test AGAIN before you treat!

[cajunjeff in reply to NoClew]

This type of information is so useful to everyone and a great example of how having a doctor who has great instincts and is not bound by all the rules helps.

We really do not know much about how long we can stop btk inhibitors, how long a remission they might give us, can we go right back on them if we progress or does getting off them create resistance. I have developed a persistent rash, probably ibrutinib related, and am on a short treatment pause now.

The rash seems to be resolving, likely confirming ibrutinib as the culprit. But what will I do next week? Get back on full does ibrutinib and see if the rash cycle got broken (I went two years without any rashes)? Go to a reduced dose of ibrutinib? Switch to acalbrutinib? Or just stay off of all meds and see if I progress?

No easy answers there and the answer that is right for me might not be for someone else. Its nice to know a true long term drug holiday is even a possibility for me.

I think it is awesome you are doing so well and that your numbers are holding steady.

[NoClew in reply to cajunjeff]

Thanks, cajunjeff. It is important to be reminded that each of our responses will be different.

Odd that your rash would wait 2 years to show up. Did anything else change? add a new medication or supplement that might not play well with IB? When 1st offered a dose reduction I took it. I'd heard several doctors say that most of us are probably on higher doses than needed, particularly for maintenance, leaving the excess drug to attack where not welcome?

Beyond that, like you, there were almost too many options. I even considered trying to add venetoclax, thinking I could handle the pain, etc, if only for a limited duration. But we were limited by the rules of a clinical trial.

My decision was a year in the making, with several short timeouts. It was suggested that many short breaks were more likely (notice carefully chosen words) to lead to resistance than stopping. And looking at my numbers, though mrd testing was not done, I could get 6 months to 2 years or maybe more before progression. I made awesome travel plans for the year, pulled the trigger, and 2 weeks later - COVID lockdown. Great timing. 🙄

Wishing you the best, t.

[pragnar]

For me I am taking 1 x 100mg for two years and my blood work is perfect. Last two months I even half that and broke capsule in two and my blood work is still great and my platelets improved. I cannot swallow the pills so I am opening them and putting them into yogurt. I asked doctor about that and he said the reason they recommend not open the pills is because they did not tested that way. I always wondered about what happens when we take the full dose, our condition improve but now the question is what is the medication doing now? Is is now creating unwanted side effect because there is less to do? I tried to stop taking Imbruvica in the past, before acalabrutinib but my blood work went bad after 3 months.

[mnmnewtons in reply to pragnar]

After a short stint on Venetoclax with 4 monthly Rituxan infusions, I have been on Acalabrutinib for 2 years. In that time I have been uMRD at <1 in 10,000. For the past year my Acalabrutinib has been cut to half dose, 100mg.I just had a MRD test measuring 1,000,000 cells and had about 1,400 CLL cells identified. I'm TP53 deleted, unmmutated IGHV and complex karyotype. I am feeling very good and my blood tests are within or very close to normal. I am heading toward 6 years of CLL diagnosis and treatment. It was a very bumpy road with Ibrutinib and its side effects and then Zydelig ending with pneumonia. Smoother sailing now.