Going from MRD Negative to MRD Positive in 3 Months

[kerrysligo]

Hi Everyone - I achieved MRD negative status in February 2022 after being on V+O for 12 months. I was told that my July 2022 MRD test is now MRD positive. I was curious as to whether there is an expected timeframe for how long MRD negative status typical lasts. My current blood test results are all good but 3 months to be MRD negative seems very short. I am wondering if anyone else has had a simialr experience and what my expectations should be going-forward. Thank you

[lankisterguy Volunteer]

Hi kerrysligo,

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I've done that a few times. Once on Idelalisib / Zydelig, and twice on Venetoclax /Venclexta mono. I was negative or undetectable and the next time we checked I was 0.30% and as high as 1%.

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About the only way to estimate your rate of progression is to watch the plot of MRD and then ALC. In the 2010s my CLL expert and I wanted to keep me below 1%, but now in the 2020s he changed his theory and prefers to stop treatment and wait for full iWCLL progression before starting the next treatment. pubmed.ncbi.nlm.nih.gov/295...

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Len

[kerrysligo in reply to lankisterguy]

thanks for the feedback and the link!

[SofiaDeo]

I have had remissions as short as a year. Remember, the CLL treatments don't get rid of the cells 100%, they get them low enough so they generally don't affect us much. Low level of disease usually correlates with ability of bone marrow to make normal platelets, etc., no swollen lymph nodes or swollen spleen, no horrible B symptoms like night sweats. So going out of uMRD just means the number of CLL cells has gone above X.

Everyone is different, I don't think there is a "normal" for how long a treatment lasts, at the individual level. The numbers posted for remissions are for large groups of people. Within these groups, are people whose disease never comes back, and those whose disease comes back earlier. So if you have an "average" uMRD period, well, you are "average". If you aren't highly symptomatic, and your lymphocyte doubling time isn't really short, you may yet go a few more years before needing treatment again. I am at the point, if I get 2 years off the meds at a time, I will be satisfied. But that's just my feelings, I have a really aggressive disease, and am happy I am still alive At All. I was expected to die, and I almost did about a year after diagnosis, but the treatment worked. And then another. Just chugging along.

[LeoPa in reply to SofiaDeo]

I m really glad that you made it. Your contributions are invaluable.

[kerrysligo]

Thank you so much - very helpful to know. Sorry that you are dealing with a more aggressive type but glad to hear that the treatments worked (and best wishes that they continue to do so)!

[richutchens]

I go to Mayo Clinic in Jacksonville Florida. They told me I needed 3 negative MRD to be considered in remission. I’ve had 7 negative MRD in the last 21 months. Good luck to you.

[E-Lynn]

I take MRD- with a grain of salt. There is a fine line between + and -. I, like Len, have been on both sides. MRD- or uMRD testing doesn't get to all those pesky cells hanging out in the nodes etc. It's clearly more important for clinical trials and drugs looking for FDA and other acceptance, For us -- enjoy and when yout get it and if you don't, know that it may be just around the corner.

[ttomo]

I am being seen at Mayo in Minnesota. I achieved uMRD at the end of a 14-month trial with I+V+O in August of 2020. The trial requires three-month visits for six years post treatment with complete body CT scans once a year. In September I asked my doctor if they are checking my MRD status, and his reply was that we will know if you are no longer uMRD if your blood numbers begin to change. I would think that checking MRD would be quite standard. Perhaps they are trying to prevent unnecessary worry?

I wish you patience and all the best, kerrysligo. I would imagine you are still considered in remission, and that is something to still feel good about.

[tola2222]

PFS after uMRD.

From my previous post:

My question: What is the PFS for those on Ibrutinib who have reached U-MRD and took a drug holiday?

Dr. Furman's answer:Thank you for your question. There are no data, but there are anecdotal reports of patients going years without further treatment.

[thebigdipper]

I've been MRD neg for almost 7 years after FCR. My lovely CLL specialist continues to remind me that it will come back one day and will get treated when it does, so just live my life and don't worry about it. She also says that my MRD neg status might change - not because my disease is any worse, but because tests are getting more sensitive all the time and will pick up some very low instance of CLL traces earlier than they can today. I appreciate her frankness.

If your bloods are good, try not to worry about something that can be detected but is not making you I’ll at the moment.

[kerrysligo in reply to thebigdipper]

thank you very much! Great to know.