I read some where that having a high CLL reading in your bone marrow doesn’t matter, can anyone explain this please?
High CLL IN BONE MARROW: I read some where that... - CLL Support
High CLL IN BONE MARROW
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This is my weak interpretation of the significance of the CLL B-cells significance in bone marrow. The link sited gives you Dr. Weirda's full explanation---he is a CLL specialist.
Blood cells begin in the marrow as stem cells. In a healthy person (without CLL) those stem cells mature and move out of the marrow into the blood stream. The CLL B-cells do not move on and do not die.
The accumulation of those B-cells crowd out other cells which results in decreasing levels of ---red blood cells, platelets, neutrophils, etc. So yes, the level does matter.
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It matters in so far as very high levels cause bone marrow failure which is evidenced by falling Hb, platelets and neutrophils. Untreated, eventually you would die of anaemia, infection or a bleed somewhere.
However, it’s not hard to clear your bone marrow of CLL, monoclonal antibodies such as Rituximab or Obintuzumab will do it fairly quickly.
It’s the CLL cells in your lymph nodes that are harder to treat and that’s where they hide and multiply. Ibrutinib empties the lymph nodes of CLL cells and prevents them returning, which is why the blood lymph count rises initially before starting to fall as they die off. Using Rituximab or Obintuzumab with Ibrutinib brings the counts down more quickly.
Jackie
Thank you very much for that, very enlightening
One further point to summarize is that it’s not the number that matters (so 90% BM infiltration is not necessarily worse than 80%) it’s the downstream effects of reducing production of healthy blood cells . So much so that some CLL experts including my own say there’s no need to do a Bone marrow biopsy on anyone with a high lymphocyte count pre treatment as if you have that many lymphocytes in the blood they will be in the bone marrow. And instead they are keen to do the bone marrow biopsy after treatment if the nodes and blood counts normalize to be able to confirm MRD negative status.
In other words unless you are unable to produce healthy cells because of it bone marrow infiltration percentage is not that important according to this school of thought. Rather getting rid of it is important as that predicts long remissions.
Thanks for that great explanation. I've been on ibrutinib and obinutuzumab for six months now and my numbers have all moved into the normal range. I'm about to have a follow up BMB - I was at 80% at start of treatment.
Just FYI, I learned somewhere that the drug names ending in 'mab' mean Monocolonal AntiBodies. (They attach to a cell surface receptor - CD20 in the case of rituximab.)
I think '...ib' names like Ibrutinib indicate pathway inhibitors.
Anyone know why the '...clax' drugs like Venetoclax are named that way?
-toclax... a BCL2 inhibitor
-tinib... tyrosine kinase inhibitor
druginfo.nlm.nih.gov/drugpo...
Rituximab
xi.. means humanized chimeric (mouse)
en.m.wikipedia.org/wiki/Nom...
~chris
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The misinterpretation may have come from something I posted a few days ago.
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I quoted Dr. Nicole Lamanna as saying that a patient could have a BMB result showing 100% occupancy of marrow with CLL and still have acceptable platelets, neutrophils, RBC, Hct & Hgb.
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(IMO)That should not be interpreted as " a high CLL reading in your bone marrow doesn’t matter"
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As jm954 / Jackie describes in her reply- I would expect that a patient in that situation would likely be monitored very closely to detect when the inevitable drop in blood results will happen.
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Len
I think it's important. My marrow was so crowded. I had treatment and 3 cycles later I am in remission. BMB was last deciding factor for my start of treatment. Was on W&W 12 years.
I had high cll in my bone marrow. It crowded out my red blood cells and caused sever anemia. My body couldn't handle benamustine. I'm now on imbruvica for 8 months. My white count is down to 17,000. Hemoglobin is up to 13.9. Platlets at 383. I'm feeling great now. Wishing you and everyone the best. God bless Cindi