Update: After 9 months on MSK trial 20-044, I am uMRD in blood, CT Scans show all nodes are shrunk and my Dr. is "very very please." The first report from yesterday's BMB is below. "Few B cells seen," is this something to be concerned about? The report was just posted and my Dr. is on vacation next week. Has anyone else seen a similar comment re "few B cells seen?"
Interpretation:
No abnormal mature B cell population detected. Few B cells seen.
No immunophenotypic evidence of involvement by B-cell lymphoma or leukemia is identified. Number of cells acquired: 359 thousand.
Thank you
Susan
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It seems that you are also at least uMRD4 (less than 1 CLL cell in 10,000 white blood cells). There's no indication that those few B cells are CLL cells. "No abnormal mature B cell population detected" and "No immunophenotypic evidence of involvement by B-cell lymphoma or leukemia is identified."
I was uMRD 6 in blood (Nov 2023 and Feb 2024 which is why they have me stopping treatment). Do we get a MRD level for BMB? Yes I should be celebrating but am already moving to “watch and worry,” and any sign of TTNT etc.
Need to work on worrying less! Thank you for your reply. This forum is awesome!
MRD in the bone marrow takes longer to achieve than in the blood. Achieving a bone marrow uMRD sets you up for an excellent chance for a long remission. That said, I know what you mean about 'watch and worry'. It's the uncertainty of living with an incurable blood cancer that (nearly) always comes back, which can be one of the harder things to live with when we have CLL. Try not to let that spoil your opportunity to enjoy the time when CLL has been vanquished for at least a few years.
It sounds to me like they're sending off blood samples to Adaptive Biotechnologies for ClonoSEQ. ClonoSEQ and other NGS MRD tests work with both blood and bone marrow samples, and the report would say which sample was used. I would think a trial would do both blood and marrow.
My trial an M.D. Anderson did. My initial ClonoSEQ was done from BMB. I had one after that from only peripheral blood (PB), as they call it, then another from both BMB and PB, then another from PB alone, and the final from both PB and BMB. I'm due to get my first quarterly followup at the end of May, and it will only be PB. This was all specified in the long Protocol document that I signed. You may have a similar document, though they may have ony asked for a signature agreeing to the blood draws, CTs, treatment, and BMB - it might not mention ClonoSEQ. But it might says something like "MRD by NGS."
At M.D. Anderson, I had to ask for copies of the ClonoSEQ report. I think they don't like explaining all the details of it. They know I'm a nerd, and I've spent time on the phone with Adaptive and read multiple research papers on the test itself. I think it's certainly possible to be uMRD4, 5, or 6 in marrow, and uMRD6 in blood. In any case, it's an excellent result, and bodes well for a longer remission.
I would also mention that I get a Lymphocyte Subset Flow Cytometry on blood periodically on my trial. That test counts the number of CD3, CD4, CD8, CD16, CD19, and CD56 cells. Those are lymphocytes. If the drugs did their utmost, they also kill the normal B-cells, so the CD19 count would probably be 0 if you are uMRD6 in blood. Likewise, marrow may see few, if any B-cells. So that's a good thing, actually.
When treatment ends, one thing to look at is how fast the B-cells recover. Lymphocyte count doesn't show this, because lymphocytes can be T-cells, NK-cells, or B-cells. Hence the Lymphocyte Subset Flow Cytometery.
ClonoSEQ reports also show counts of IGH Total Unique Sequences. Assuming that you're uMRD6, those generally represent normal B-cell sequences from the IGH gene, at least until one of the unique sequences greatly outnumbers the others and becomes a new Dominant Sequence, which is theoretically possible. I don't know how common that is, if it happens at all, though. While on the trial, you'll probably see the IGH Total Unique Sequences number drop a bit. Mine rose a tiny bit on the last test at the end of the trial, but I also had an infection 2 months previous, but it was still way, way less than the pretreatment sequence count. My BMB IGH Total Unique Sequences has been lower than my PB IGH Total Unique Sequences, BTW. I think that's because the normal B-cells survived longer once I was off of Obinutuzumab.
The IGH Total Unique Sequences should gradually rise after treatment. I haven't had a post-treatment ClonoSEQ yet. I was uMRD6 on both blood and marrow, though it did detect one of my 2 sequences out of 2.8 million nucleated cells. With only a single one, I'm still below the 1 million cutoff. But it's a reminder that even at uMRD6 doesn't mean CLL is eradicated completely. But it should come back very slowly.
Another patient I've shared ClonoSEQ results with stayed at uMRD5, and slowly grew Estimated Sequence Abundance of the Dominant Clone(s) in the from there, still not hitting uMRD4 in a year.
If anyone else is interested in sharing ClonoSEQ counts, I'd be really interested in the nuances. You can IM me if you don't want to share with the group.
Hello Susan, it was great to hear about your experience with the MSK trial. I rejoice with you and your family. What a marvel to see the power of scientists at the top of their game as they work to improve the lives of others!
Spring is coming soon here in the States, a time of renewal which I hope you enjoy to the fullest. Thank you for sharing this news. Carolyn
Hi Ptown, thank you for your kind note, appreciate it. Happy to answer any questions on this trial or my experience on this journey. Enjoy the Springtime!
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