Anemia?

[Guffy]

Hi beautiful people! Me again, with another question about this mysterious and confoundedly unpredictable disease. Last time I posted, the hematologist had me on monthly visits, on notice for treatment. The only criteria, as far as I know, was a near-doubling ALC, mild splenomegaly and lympho- lympho something! Swellings! You know what I mean!

But as of yesterday, the ALC stabilised (73.61), as did the splenomegaly. So I have a reprieve for least 6 weeks. However, and he did not mention this, the hemoglobin dropped to 132, 3 points below the lower end of the acceptable range. The RBC is on the cusp (450) and the platelets are happy and bouncing about in proliferation. As he did not mention this, I don't think it is of great concern right now. But does it technically indicate anemia? I ask just so I can understand my condition better.

Thanks in advance, and good wishes to all!

[AussieNeil Partner Administrator]

Thanks for reassuring others about the value of closer monitoring when lymphocyte doubling becomes a concern, rather than rushing into treatment. Great to see that your ALC has stabilised as well as your spleen.

I saw "Mild normocytic anaemia" first noted on my blood test results when my haemoglobin trended down to 130. (My pathology laboratory's reference range for haemoglobin for an adult male is 135 to 175, so we have the same lower limit). That was nearly 6 years before I needed treatment.

According to my.clevelandclinic.org/heal... Normocytic anemia happens when you have fewer red blood cells than normal, and those blood cells don’t have the normal amount of hemoglobin. Most people develop normocytic anemia because they have an underlying chronic illness. Healthcare providers treat normocytic anemia by treating the underlying illness. (My emphasis)

The haemoglobin trigger for starting treatment when we have CLL is 100. Mine had drifted down to 105 when I started treatment. Dietary changes didn't help me, because it was CLL infiltration of my bone marrow that was causing a range of cytopenias (low neutrophils, platelets and red blood cells - hence less haemoglobin).

Neil

[Guffy in reply to AussieNeil]

"Mild normocytic anemia." Another one for my vocabulary. Thank you, and take care!

[cajunjeff]

Hello Guffy, I will give you a layperson’s try of an answer. Does your hemoglobin test technically confirm that you have anemia? I would say yes, based on the reference range you provided, but no as to whether your hemoglobin levels will impact any activity you do, unless you run marathons and such.

Technically, I would think anyone who falls out of the normal range for hemoglobin is anemic. It sounds like from your post, your lab uses “13.5” as the low end of normal for hemoglobin. At 13.2, that technically would be anemia. I have seen other labs use 13 as the low end, so you would not be technically anemic using a different range. Reference ranges for normal hemoglobin can also change due to altitude or as we age.

In the big picture of our cll, I dont think having hemoglobin just below normal is a big deal. Our hemoglobin will drop for most of us as our cll progresses. It’s the rate that it drops that is impt. Yours might hover in the 12 to 13 range for years and you could feel just fine.

Mine went from 13 to 7 in a few months. That was due to my hemolytic anemia though, a not too common cll complication. Drops like that with just cll are not typical.

I felt okay so long as my hemoglobin stayed above 10, I still did my 5 mile daily walks. I could really feel it below 10 and walks to my mailbox became hard to do at 7. As the meds fixed my hemolytic anemia, my hemoglobin rose. When it got over 13, where you are now, I felt like doing backflips.

Thats a long way of saying that you appear to have borderline normal hemoglobin that bears watching, but may not impact the way you feel until it drops much lower. That could be in a year or in many years. The rate of drop is impt. If your hemoglobin has been on a long, slow slide, thats a good sign, but no guarantee, that your hemoglobin will stay on a slow decline and be relatively stable for a long time.

Of course your doctor knows best, I would not rely much on my lay understandings of things. Good luck. And I am guessing lymphadenopathy is the term you were trying to remember. Thats just a measure of how much our lymph nodes are swollen due to infiltration of cll cells. Lymphadenopathy can be a trigger to treat cll on its own if it is extensive throughout the body and is causing problems.

[Guffy in reply to cajunjeff]

Thanks for the reply. Yes, I'm not worried about it. I do get more tired than I was a year ago, but it's impossible to know if that's CLL, some vitamin deficiency, or some other quite unrelated thing. So far, the heaviest burden has been the unpredictability of the disease. "See me in a month, and we'll probably treat", the doc says. Then, "No, come back in six weeks." Watching the WBC stats go up, down, backwards, sideways, doing the hokey pokey. But I'm learning to cope with it. I dare say when it comes to treatment, and I have to deal with side effects, I will look back wistfully on these days! Thanks again, and take care!

[NMgal in reply to Guffy]

Hi Guffy,Good and interesting post! Not to sound like a cheerleader, but I am, I would not count on many side effects if I was you.

We have so many choices these days, so many did not even exist years ago when my mom had non-hodgkin lymphoma.

I've been in remission for 4 years and a few months, just started IVIG 3 months ago. As far as my treatment, it was one year on ibrutinib and then 2 years on Obintuzamab and Venetoclax.

Happy to say, this third Infusion of IVIG I had a few days ago, am finally Feeling Like my old self in many ways and I could not be happier I was beginning to lose hope for a while since I had some not fun side effects from the IVIG lot of fatigue, chills, low grade

fever.

Looks like for now I have moved Beyond that. With this third infusion though I did have some really strange shoulder joint issues hot burning weird side effects. Just took a few Benadryl and felt better. Not bad considering how much better I'm beginning to feel.

It really is the small things that mean so much, especially when you just don't feel 100%.

All the best

Lorna

[Guffy in reply to NMgal]

Hi there, Lorna😀 Thanks for the reply. I already have the pile of printed notes telling me of possible side effects (V & O), and, boy, is it hard reading! Anything from a mild itch to reduction to a quivering wreck! Reassuring to know I needn't worry. Hospitals have to tell you all the possible outcomes, as unlikely as they might be! All the best to you.

[NMgal]

Yes, we're all so different. Don't let all that information overwhelm you. you're right, their just covering the bases or their rear ends, or both👍

[GoneWalky]

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