I finished Venetoclax treatment last year in the uk. My haematologist is awaiting the result of a MRD blood test and if negative then he tells me I will be discharged. Bit of a surprise to me as I was diagnosed in 2004 and have been routinely monitored since then. I had FCR treatment in 2014. My blood test results have never been terrible…I was told that my dodgy white cells tend to hide in lymph nodes rather than circulate in my blood stream…..I am therefore wondering if a blood test for MRD will give a reliable indication. It was said at one stage that my diagnosis could have been SLL but exact diagnosis didn’t really matter as the treatment is the same in either case. Can anyone offer advice please on whether a blood test in my case is likely to be reliable in testing for MRD? Also, is a discharge from outpatient care to be expected if the test does give a MRD negative result? Many thanks in anticipation.
MRD blood test after Venetoclax treatment - CLL Support
MRD blood test after Venetoclax treatment
Hi yorkie19
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Congratulations, you have reached the point that many of us with CLL envy: the opportunity to stop (or pause) treatment and go back to Active Observation ( aka Watch & Wait). The only unknown is whether it will take 4 years or 10 years until you need to restart treatment.
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Like nearly everyone with CLL, your CLL does not follow a strict set of rules or guidelines, and the best predictor of your future maybe your own past history. Since you had 10 years from diagnosis to first treatment, and perhaps 7 or 8 years to your second treatment, you will likely be 5 to 7 years this time.
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A MRD test that shows 0 CLL cells in 1 million from a bone marrow sample might predict the higher end of the range, but that is just a guess (and those NextGenSeq tests are rarely done in UK).
Getting 0 CLL cells out of 10,000 from a specialized FLOW test on your blood (probably the test you have the results for) may also predict a longer time to your next treatment. The researchers are just getting some data that shows a better remission from 0, but those are statistics from many patients, and cannot predict the results for one patient. So most CLL experts are preferring to put patients on Active Observation regardless of the test results.
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Having most but not all of your CLL appear in your lymph nodes is not unusual, many of us have a mixture of CLL in the nodes and our blood. So your doctor has likely felt for your nodes in many places on your body and concluded that they are normal size. A CT Scan could confirm that result, but it doesn't provide information that is useful for deciding how to treat you in the future, so outside of a clinical trial, a CT Scan would probably not be done.
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So I return to my original congratulations- I hope your remission and holiday from treatment is very long, and you can avoid any serious infections and 2nd cancers for the foreseeable future.
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Len
Thank you so much for your reply. My main concern is that if the test result is MRD negative then I will be discharged ie. taken off watch and wait. I also am concerned as to the reliability of the MRD blood test.
Hi yorkie19,
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Since CLL is incurable, I would expect that you will be on W&W regardless, and although I don't know the NHS, I would expect that the only difference is whether your blood tests and check ups will be done by your GP or a Consultant.
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And our USA CLL experts are still trying to figure out what should be done for CLL patients that are not MRD-U after two years on venetoclax (Venclexta) and obinutuzumab (Gazyva).
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I reached MRD-U in 2016 after 9 months on Venclexta and paused treatment at 18 months, but my MRD rose to 1% positive within 4 months. I restarted Venclexta and stayed on it until I reached 6 years total and then was over 1% positive January 2022. I am now on acalabrutinib (Calquence) and maintaining just under 1%.
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So I feel that reaching MRD-U is a good sign, but does not provide a strong indication of how long you would be in remission whether you stopped now or not.
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Len
Did you have a CT scan after you finished Venetoclax to see if there are any enlarged lymph nodes there?
In case of CLL with SLL presentations, to test the blood work only doesn’t show the whole picture. I am not sure how the MRD can be established without a CT or BMB
Maybe 🤔 asking your doctor about what exactly being discharged means for you personally?
I also have SLL presentation and finished two years of Venetoclax/Rituximab treatment and there was no mention of discharge from my doctor.
Good luck and congratulations
Dana
I have had CT scans and these are clear. I do intend having a chat with my haematologist but wanted to obtain other people’s thoughts before I do so. Thank you for responding.
I am on W&W, discharged by my consultant and I have a 6 monthly blood tests sent from Leeds outreach centre. But if I have any concerns whatsoever I can contact either the Magnolia centre at York or the nurse at Leeds outreach and I would be able to see the consultant if they thought it necessary.
That sounds odd to me. My husband had FCR in 2019 and is now on watch and wait again. Likely to get Venetoclax and Rituximab next time. Even if you get to MRD you still have CLL and will be monitored. Is your consultant a CLL specialist? If not I would suggest you find one. Good luck with your results
Congratulations!Re your discharge-I was told by an NHS consultant, whom I greatly respect, that MRD negative status does not equal a cure. I also don't think there are any stats.that would support a view that Venetoclax is curative (nor the V & O combination).
My last MRD test (during treatment) was negative. I expect a further one about 3 months after treatment has finished. But even if still negative at that point I am sure I will not be discharged.
So in your position I would make a request that you not be discharged-in effect revert to W & W, as before.
Antony
My husband ,had FCR in 2016 and reached Mrd.He sees his consultant every 6 months.Jenny uk
they did a fine needle biopsy in the Hovon 158 trial and found CLL cells hiding in lymphnodes, my treatments were IOV and OV They discovered a small lymphnode enlargement under my left arm in the ultrasound which cannot be felt in physical examination. So I had a biopsy done last week, no results yet. My concern was mostly ( blood still perfect, no cancercells per ngs) what kind of CLL cells if any are hiding there, dormant cells which can cause an issue possibly later?} There was an article in cllsociety suggesting that lymphnodes if they are enlarged should be tested additionally.
mickimauser11 -
What was the result from the biopsy of your lymph node? Did they find CLL cells?
=seymour=
Congratulations. I'm on V and R as a second line treatment after FCR 4 years ago. I hope all turns out well for you. X
Captivate Trial MRD status
MRD negative
MRD testing not offered
Ibrutinib / Venetoclax Journey
