We are asking for patients and caregivers to participate in a survey which will help us learn about knowledge, attitudes, and preferences about MRD (measurable residual disease or minimal residual disease) and limited duration (also known as fixed duration) therapies. The goal of this survey is to learn more about what CLL patients know and really think so we can best serve help in the future through our nonprofits’ work. We would also hope to publish the results so that we can inform hematologists as the patient’s opinion on these matters and they don't rely on their intuitions. Please take a few minutes to help us complete this important work.
Great questions Brian. Where I live in Canada MRD testing is not done as part of treatment protocol...I hope this becomes standard practice in the future.
Completed the survey Brian. I have not heard much about MRD in Canada either, i don't think it is common here, and I think it should be more common here. I think it is a great test to see where you are with your CLL, and help give you reassurance.
I also took the survey. I would love to know my MRD status, especially after completing FCR next week. But I'm also in Canada where they don't do MRD testing.
I am in treatment with Ibrutinib (for 28 months good results ) my Dr says Ibrutinib do not achieve uMRD , anyway as i have been with Hb and hematocrit in the upper borders ( with a negative resukt for jak2 v617f mutation ) maybe in the future we will do a bone marrow flow cytometry , after all jak 2 and other genetic test for polyglbulia are finished ) hopefully i hope i don´t have both CLL+ Policitemia Vera ( have had no symptons at all on this one ).
About 10% of the participants in an early Ibrutinib trial reached uMRD after 4 years of monotherapy. So while it is possible to achieve uMRD on BTK inhibitor monotherapy treatments, you really need a limited duration combination therapy to have a good chance of achieving uMRD and hence being able to cease taking drugs to manage your CLL while you enjoy a hopefully long remission.
So if I am in the USA, on treatment with Acalabrutinib only, should I be asking my oncologist about treatments that could possibly bring me to MRD?
Are only trial participants being tested for this? What about us regular patients? Is the MRD testing a standard of care? Can it only be done at major treatment facilities? Like Chicago or New York or Boston?
I presume that those in the USA could ask their specialist to prescribe them a limited duration combination treatment off label? I appreciate that insurance cover would need to be negotiated, but I would also suspect that insurance companies would probably prefer to fund a year of combination treatment medication rather than indefinitely fund maintenance therapy at roughly half the cost. (After two years, the indurance company is better off.)
I'd be interested in replies from US based members who have accessed a limited duration combination treatment outside of a clinical trial. Some have mentioned switching from monotherapy or at least having discussed this with their specialist.
I took the survey and thought it was excellent. Very focused, and made me revisit my own preferences. I realize I would have answered differently a year ago before starting Ibrutinib, which has worked as expected. I was pushing for Venetoclax because it was limited, but now look at that as a future option for me. One huge issue was cost of long term therapy, but it turned out my insurance coverage is covering Ibrutinib. I’m glad that cost was part of the survey because that was a worry that was eating at me prior to starting therapy—and I couldn’t get a straight answer from my insurance company! My provider has never mentioned testing for MRD, but this is something I’d like to know at some point.
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Survey for CLL patients having taken Venetoclax or Acalabrutinib
APDS Study - USA - Connecting with APDS Patients/Caregivers
