Peripheral MDA : My Dr. doesnt think I really... - CLL Support

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Peripheral MDA

Downriver555
Downriver555

My Dr. doesnt think I really need a BMB to see if I am MRD negative. I finished my treatment of gazyva and veneteclax in May. What is the name of the test that is pheripheral to detect MRD status and how accurate is it.

Thanks

27 Replies
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I am exact same regimen and have one month of V pills left. They said I don’t need bone marrow biopsy either, I think they plan to do flow cytometry on my peripheral blood rather than on my bone marrow aspirate. I will let the group know more next week after my appointment .

-John

it's a flow cytometry test geared toward finding MRD. thats most common. there are now far more expensive tests that look at more cells and are more accurate. NGS - next generation sequencing

I’m 4 months into V+O. Only 2 infusions left in July. Yeah!!! My Dr. will be doing a flow cytometry test in August after I’ve finished my infusions. And then I will continue on my pills until March. At that point, he said he would do another flow cytometry test. He doesn’t do bone marrow biopsy‘s unless he feels like there’s residual cancer cells.

I hope you’ve done well on your treatment. My numbers were back within normal range so quickly it gave me great hope.

Sending best wishes.

-Sally

Looks like progress.

good health,

Owen

I'm same. My specialist is saying peripheral MRD test results correlate very closely to BMB test of same. So I think that is the plan when I finish venetoclax - peripheral only. I would feel more secure in the result with BMB though. It seems to me there has been more than one member here who has posted they were MRD negative on peripheral blood, but not quite there on BMB.

AussieNeil
AussieNeilAdministrator
in reply to PlanetaryKim

BMB is more accurate, given that's where the blood making action is, but the medical procedure is obviously a higher risk than a simple blood test, even before considering the big difference in cost. Generally BMB results don't show as great a degree of uMRD achievement as with peripheral blood. CLL cells are more vulnerable in the blood stream and lack their protective micro-environment that can help them survive treatment, so you are less likely to find surviving CLL cells in a blood test.

That's what I thought. So I was surprised my specialist said peripheral MRD parallels marrow MRD quite closely and is sufficient. I think the reality is MRD testing not yet a funded practice here in BC. So when my time comes, I will be lucky to get even peripheral MRD test.

AussieNeil
AussieNeilAdministrator
in reply to PlanetaryKim

"Parallels" just means that the test results correlate, not that they are equivalent. Sufficient is what we have to accept when neither we nor our health systems can afford the testing. My doctor (surprisingly to me) agreed to me having an immunophenotype test (i.e. the flow cytometry test used to diagnose CLL over a month ago. According to that test result, I no longer have CLL, as no clonal B-lymphocytes were detected - well no B cells for that matter! It's not an MRD test, but it's encouraging non the less.

Congratulations on that!

That's great news! I hope in a few years this proofs to be the case for everyone. I would love to say "so long cll have a nice trip".

That is excellent progress Neil.

I know that here in Ontario, my oncologist said that we don't have the capability to test MRD, which is why he wants me to go through all 6 rounds of FCR.

Here too in BC my specialist said same... but he also said that by time I am finished with venetoclax (Feb 2022), they hope to have MRD testing funding and on the books. So they are working on it.

johnl
johnl
in reply to PlanetaryKim

in the trial i'm in I often have both at once. they only differ by 0.01.

john

PlanetaryKim
PlanetaryKim
in reply to johnl

interesting! Good to know. Still... that 0.01 could be the difference between being declared u-MRD and not.

johnl
johnl
in reply to PlanetaryKim

But UMRD like age is just a number.

john

PlanetaryKim
PlanetaryKim
in reply to johnl

so true!

bkoffman
bkoffmanCLL CURE Hero

Great news. Flow cytometry measures goes to 1/10,000 CLL cells and is the standard way to check for MRD status. ClonoSeq using NGS and may be accurate down to 1 in a million and is approved now in the USA. There is a good correlation between MRD in the blood and marrow with VenG that you had, but clearly there is less uMRD found in the marrow than in the blood in most trials. uMRD status in blood and marrow are more tightly linked with the combination of V+I. Stay strong. we are all in this together. Brian CLLSociety.org

ttomo
ttomo
in reply to bkoffman

Thanks for this explanation, Brian. I’m in a trial which ends in three weeks at which time I will have a bone marrow biopsy. Is there a reason, other than cost, why they never checked MRD in the blood perhaps every quarter during the course of the trial? It would seem that that would be helpful and definitely encouraging for the patient (assuming successful trends). Be well!

bkoffman
bkoffmanCLL CURE Hero
in reply to ttomo

No need to do MRD testing until CBC is normal. Every 3 months seems too often.

ttomo
ttomo
in reply to bkoffman

Thanks. My CBC was normal after three months of treatment. Are you saying that at least one MRD test would have been appropriate then?

bigunwill2
bigunwill2
in reply to bkoffman

Thanks for explanation. I tested MRD positive on BMB using the more sensitive test, but the report said I had .02% CLL cells. I took this as good news.

bkoffman
bkoffmanCLL CURE Hero
in reply to bigunwill2

So would I. But I might continue treatment to see if you could driver it lower.

bigunwill2
bigunwill2
in reply to bkoffman

I started on acalabrutinib on Friday.

I just had a peripheral blood MRD flow and was negative. But my BMB showed 0.4%. Apparently about 15% of patients show this discordance. So I keep going a few more cycles.

bkoffman
bkoffmanCLL CURE Hero
in reply to Awksom

I would agree.

Downriver555,

The cut hay should be in the stack. Next years seed should still be in a sack.

Some measure the next crop by what they have put up in the past, and others look at what happens where the seed in in the ground.

BNB is more like checking for seeds in the soil, rather than looking at the top of the ground after spraying roundup.

JM

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