Remission?

[haposwald]

Quick question for today. My doctor told me that when absolute lymphocyte number is below 5 thousand that is like being in remission true or false? Neutrophils and monophils still high Lyphocites number was 4723! I am feeling pretty good thanks for any and all responese

[Hidden]

different doctors and different labs use different numbers for normal alc #

the lab my doctor uses is 3100. dana farber is 2900. where is your facility

[haposwald in reply to Hidden]

Quest in California reference range for abs lymph. (cells/ul) is 850-3900

[Hidden in reply to haposwald]

where did your doctor get 5000? maybe that was the figure they used at his /her medical school.

[AussieNeil Partner Administrator in reply to Hidden]

The 5,000 figure is from the definition of CLL - more than 5,000 monoclonal B-lymphocytes. Below that figure it is either MBL or SLL.

[haposwald in reply to AussieNeil]

That’s more to what the doctor said that the monoclonal B-lymphocytes when below 5000 is considered remission ?

[AussieNeil Partner Administrator in reply to haposwald]

Per my reply to Smakwater/JM below, it's 5.1.1. Peripheral blood lymphocytes (evaluated by blood and differential count) <4 × 10^9/L.

[Hidden in reply to AussieNeil]

My oncologist has never told me I was in remission. I wouldn't even know if I was.

[AussieNeil Partner Administrator in reply to Hidden]

You can determine for yourself whether you have reached a partial or complete remission by checking your response characteristics against section 5 of the iWCLL Guidelines per my reply to Smakwater below: bloodjournal.org/content/bl...

[Hidden in reply to AussieNeil]

Sorry, Neil, tried the link you gave but it won't open.

[AussieNeil Partner Administrator in reply to Hidden]

Sorry, now fixed. Complete Response/Remission requirements are in section 5.1 and Partial Response in section 5.2.

[Hidden in reply to AussieNeil]

Thanks. I'll read it. I thought it might be my computer acting up!!

[haposwald in reply to AussieNeil]

I would think partial for sure as no symptoms at all , no signs of lymph node enlargement no spleen enlargement by physical exam CT scan might be better for size comparison and then will follow up with another fish test and see where I’m at! Still on Imbruvica 420mg 1x daily would it be complete even if you were still on the meds?

[AussieNeil Partner Administrator in reply to haposwald]

About 10% of patients on an early Imbruvica trial achieved Complete Response after 4 years of monotherapy.

[Hidden in reply to AussieNeil]

This is off topic but how long do I have to go off Imbruvica before dental work? An extraction? I know Imbruvica causes a problem with bleeding so I'm apprehensive about extractions. Was it 3 days before or 5 to stop Imbruvica? Thanks so much.

[AussieNeil Partner Administrator in reply to Hidden]

Per

imbruvicahcp.com/cll/safety...

"Consider the benefit-risk of withholding IMBRUVICA® for at least 3 to 7 days pre- and post-surgery depending upon the type of surgery and the risk of bleeding."

[Hidden in reply to AussieNeil]

Thanks. I suppose having a tooth pulled is surgery.

[Newdawn Administrator]

The normal lymphocyte range in adults is between 1,000 and 4,800 lymphocytes in 1 microliter (µL) of blood with some variations across countries. I see you’ve been on Ibrutinib for a while haposwald and managed to reduce your ALC from quite high levels.

To accurately assess clinical remission (usually done more in trials), a flow Cytometry test and a bone marrow biopsy is done which accurately assesses the minimal residual disease level (MRD). Outside of a trial, doctors look at the presenting blood results to gauge progress and clearly your doctor feels yours indicate an excellent response to the meds. That’s excellent even though it’s not a scientifically acquired indication of remission. Even when my bloods were spot on in range, a flow and BMB still indicated some residual B cells in the blood which meant I wasn’t yet UMRD (undetectable minimal residual disease).

However, you’ve obviously responded really well to your treatment and that’s great! He said it’s ‘like a remission’ and yes it is. Good luck and hope it continues this way and you feel well. 😊

Newdawn

[Hidden in reply to Newdawn]

newdawn is a regular flow cytometry the same as mrd flow cytometry?

[Newdawn Administrator in reply to Hidden]

As a patient it’s just a standard blood test but I’d imagine to the bio-scientist, they’re looking for different things. A flow done for diagnostic purposes is about Immunophenotyping and it’s the test used to distinguish the different proteins expressed on cells. It leads to our diagnosis of CLL based on the unique pattern and appearance of the cells studied (simply put).

I’m not a bio-scientist but I’d imagined the flow done to look at MRD status would have a different focus but it’s a highly complex process as explained in this excellent article;

antibodies-online.com/resou...

This article describes the process and application of flow cytometry in the pursuit of MRD status;

flowcytometryservices.com/c...

Newdawn

[Canuck901]

Just curious , What treatment are you on and for how long ?

[haposwald in reply to Canuck901]

Imbruvica420mg 1x daily. Also I think a big key for me was drinking as much water as I have just over a gallon a day of essentia ionized water with a ph of 9.5 been on the imbruvica for a year now

[Canuck901 in reply to haposwald]

Great results

Ibruntnib is great for cleaning the CLL from the blood but usually a lot slower in cleaning the bone marrow

You need a flow cymotrry test and bone marrow biopsy test to really confirm your excellent results MRD U in the blood and bone marrow.

Water is important anything purified is great .

[haposwald in reply to Canuck901]

Perfect thanks I will request both at next appt as I was very happy with appt but was thinking there needs to be more

[haposwald in reply to haposwald]

At the doctors Appt he did do an extensive physical exam for lymph nodes spleen etc as I’m sure a lot if not most of us do to and know what to feel for our selves! Daily! I want to thank everyone so far and glad I’m still learning always praying and hoping the best for everyone in our community

[AussieNeil Partner Administrator in reply to haposwald]

To the contrary! Drinking alkaline water can reduce your absorption of Imbruvica, making it less effective! BTK inhibitors require a stomach pH of under 3 to dissolve in this case the Imbruvica so it can enter the bloodstream. Stomach acid is typically in the pH range of 2 to 3, or highly acidic. Drinking alkaline water will reduce your stomach acidity, thereby potentially reducing your Imbruvica blood serum level, resulting in reduced inhibition of your CLL. Don't do this!!

Your body has lots of homeostasis mechanisms to maintain pH at specific levels in different parts of your body. The pH range in your blood stream is tightly controlled to be slightly alkaline. "(...healthy human-arterial blood pH varies between 7.35 and 7.45). Blood pH values compatible with life in mammals are limited to a pH range between 6.8 and 7.8. Changes in the pH of arterial blood (and therefore the extracellular fluid) outside this range result in irreversible cell damage " en.m.wikipedia.org/wiki/Aci... So by drinking alkaline water, you are just making your body work harder to maintain pH levels essential for your continued good health, which it does by reducing the amount of carbon dioxide you breathe out and reducing the acidity of your urine.

Neil

[haposwald in reply to AussieNeil]

So no more 9.5 ph water? Understood thanks

[Canuck901 in reply to AussieNeil]

Well most filtered or tap water has a PH around 6 -6.5. Would that really matter that much ? You’re supposed to take the meds with a Full glass of water

[haposwald in reply to Canuck901]

Correct I’ve been doing 1.5l of essentia plus a bunch of filtered tap water daily as my doc had made point how important it was to keep the CLL cells flushed out

[AussieNeil Partner Administrator in reply to Canuck901]

Drinking water pH varies depending on where you live.

healthline.com/health/ph-of...

Drinking alkaline water will dilute the liquid in your stomach and raise the pH. How much it raises the pH will depend on the amount of water and the degree of alkalinity. Why take a risk, particularly when it's not likely to provide any health benefit?

[haposwald]

Thanks that’s why I asked

[Smakwater]

haposwald,

Normal lymphocyte ranges are not absolute measure for remission. E.g, CR = complete remission.

leukemia-net.org/content/le...

In my perspective from reading clinical publications, remission would be a measure after treatment where no CLL is present in a bone marrow aspirate sample equal to or above 1 in 10,000 cells. In addition through CT technology, there would be no measure in the lymph nodes, spleen, lungs, or any other affected soft tissue.

JM

[AussieNeil Partner Administrator in reply to Smakwater]

You've referenced a document that was updated 10 years later, with the below reference being the latest version today (May 2020).

•International Workshop on Chronic Lymphocytic Leukemia (IWCLL) 2018 update:

bloodjournal.org/content/bl...

5.1. Complete remission

CR requires all of the following criteria (Table 4).

5.1.1. Peripheral blood lymphocytes (evaluated by blood and differential count) <4 × 109/L.

5.1.2. Absence of significant lymphadenopathy by physical examination. In clinical trials, a CT scan of the neck, abdomen, pelvis, and thorax is desirable if previously abnormal. Lymph nodes should be <1.5 cm in longest diameter. Once this is determined, further imaging should not be required until disease progression is apparent by clinical examination or on blood testing.

5.1.3. No splenomegaly or hepatomegaly by physical examination. In clinical trials, a CT scan of the abdomen should be performed at response assessment and should show no evidence for lymphadenopathy and splenomegaly. We propose to use a recent consensus response cutoff for splenomegaly of 13 cm in craniocaudal length.96,97 However, the persistence of splenomegaly may not correlate with outcome.96 The quantitative determination of hepatomegaly seems more difficult; changes such as focal or disseminated hepatic nodules support liver involvement.

5.1.4. Absence of disease-related constitutional symptoms.

5.1.5. Blood counts need to show the following values:

5.1.5.1. Neutrophils ≥1.5 × 109/L.

5.1.5.2. Platelets ≥100 × 109/L.

5.1.5.3. Hemoglobin ≥11.0 g/dL (without red blood cell transfusions).

5.1.6. MRD assessment.

In clinical trials aimed at maximizing the depth of remission, the presence of MRD after therapy should be assessed....

"...where no CLL is present in a bone marrow aspirate sample equal to or above 1 in 10,000 cells." is now referred to as U-MRD4. (4 represents 10^4 or 10,000 cells).

Neil

[haposwald in reply to AussieNeil]

Thanks Neil

[Smakwater in reply to AussieNeil]

Very Good,

Thank You