Newbie—Neutropenia and Hypocellular Bone Marrow

[Lauren H]

Newbie-- Neutropenia and Hypocellular Bone Marrow

Hello everyone, I’m 24 and new to marrowforums.org and I wanted to see if anyone has had a similar set of symptoms and gotten a diagnosis. I was diagnosed with neutropenia in April after getting some blood work done for Peace Corps. Since then, I’ve had multiple diagnostic tests, repeat CBCs, an abdominal ultrasound and lung x-ray, as well as a bone marrow biopsy.

I have sore throats all the time and am usually fatigued, no matter how much sleep I get. I also have some petechiae that come and go. I’ve been to three doctors and haven’t yet gotten a diagnosis. One has suggested it could be cyclic neutropenia, but after more careful study of my ANC over several weeks, the time frames don’t fit. Since March, my ANC has gone up and down (0.35-1.82) and my platelets follow a similar pattern but are on the low range. I attached my Excel chart of my ANC values.

My bone marrow biopsy showed I have hypocellular marrow (40-50%). In the aspirate, lymphocytes were slightly high (20%, reference 10-15%), monocytes were high (3%, 0-1%). Myleocytes were 9% (10-13% reference). Rare megakaryocytes were noted and exhibited occasional cytologic atypia.

I’ve had so many tests and am left with more questions. I only found out about the neutropenia because of the Peace Corps medical clearance process. With my current ANC levels at 0.35, I’m really depressed.

Does this sound like a particular condition to anyone? Does anyone here have similar symptoms? Any suggestions or comments would be appreciated.

[Chirley]

Hi,

I won't pretend to know what 's wrong with you.

Originally when I first showed WCC abnormalities I had blood tests 2 a week for 6 weeks and was diagnosed with anaemia and cyclical neutropenia (non typical) my neutropenia also didn't follow the normal cyclical pattern but my doc decided to call it that anyway.

The neutrophils kept falling and gradually remained at levels below 0.5 so then the cyclical neutropenia tag was removed.

You can see from my signature what I turned out to have wrong with me.

Best of luck.

Chirley

[Greg H]

Originally Posted by Lauren H

Newbie-- Neutropenia and Hypocellular Bone Marrow
I’ve had so many tests and am left with more questions. I only found out about the neutropenia because of the Peace Corps medical clearance process. With my current ANC levels at 0.35, I’m really depressed.

Does this sound like a particular condition to anyone? Does anyone here have similar symptoms? Any suggestions or comments would be appreciated.

Hey Lauren!

Sorry to hear about your problems. Like Chirley, I'm not going to hazard a guess, but I'm curious to hear what your hematologist is thinking.

There's a ton of different symptom profiles that wind up getting lumped under MDS, including some that include hypocellular marrow. Did you have any blasts or any chromosomal abnormalities?

Take care!

Greg

[Lauren H]

Thanks for your replies, I feel better being able to talk about it.

Chirley: I am also in the middle of 2 a week CBCs for 6 weeks, with the last being October 7th. My hematologist thinks cyclic neutropenia could be a possibility, but it looks like it'd be non typical and mine keeps falling, too. Hope things are OK with you and thanks for the post.

Greg: From my bone marrow biopsy results, it said blasts were 1% (0-3% reference), and pronormoblasts were 1% (reference 0-2%). I don't see anything about chromosomal abnormalities.

I've had the following tests done: CMV screen, serum protein and serum immune electrophoresis, B12 and folate tests, EBV, ANA, rheumatoid titer, anticardiolipin antibody, flow cytometry for CD55 and CD59. My hematologist ordered these tests at our last appointment: HB-F quantitative, ANA, Immuglobulins, flow cytometry for Rlo, LGL, and PNH. I don't think any of these have yielded answers.


Thanks for the comments!

Lauren

[Greg H]

Originally Posted by Lauren H

I've had the following tests done: CMV screen, serum protein and serum immune electrophoresis, B12 and folate tests, EBV, ANA, rheumatoid titer, anticardiolipin antibody, flow cytometry for CD55 and CD59. My hematologist ordered these tests at our last appointment: HB-F quantitative, ANA, Immuglobulins, flow cytometry for Rlo, LGL, and PNH. I don't think any of these have yielded answers.

Whoa! Lauren. They are really throwing the book at you, aren't they! When a routine well-physical turned up my severe anemia, which turned out to be MDS, I couldn't believe all the different tests my docs ran, even after the diagnosis.

Who knew blood could be so complicated!

All my stuff like PNH came back negative, so they eventually settled on a plain vanilla Refractory Anemia type of MDS. My impression is that a lot of the tests are used to rule out stuff -- there's kind of a process of elimination involved, and, as Chirley's story indicates, sometimes the situation evolves over time into something the docs can more easily pin a label on.

If your bone marrow biopsy included chromosome stuff, it will be in a section called "Cytogenetics," and will involve talk of normal and/or abnormal cell lines or clones. There's often a bunch of fancy chromosome shorthand involved, as well, like 8+ or dup1 (q21q32). A lot of MDSers have mutant stem cells that are wildly reproducing (my wife compares them to the Borg) and crowding out all the nice civilized stem cells. If your doc got really fancy they will have done something called FISH, which, in my reports, is called Molecular Cytogenetic Analysis. They use this to look for specific troublesome chromosomes.

Looks like some (but not all) cyclical neutropenics have a particular chromosomal abnormality, which I would think they would test you for.

How's your hemoglobin level? And, this will sound dumb, but have they checked your copper? I have a copper deficiency (who knows why?) and that's known to mimic (or exacerbate) MDS.

All of this is a royal pain, particularly when you don't even know what you have yet, and whatever it is, it's probably some weird disease no one ever heard of. But a lot of blood disorders are treatable, so hang in there.

There's a bunch of folks on these forums who know a lot more than me about this stuff, so keep asking questions and they'll help you figure out what your doc is talking about and what you might want to ask him or her.

Take care!

Greg

[Lauren H]

Hi Greg,

Thanks so much for your thoughtful response and sorry for the delay with mine; I didn’t realize you had to subscribe to your own thread to be made aware of responses!

That’s my understanding about the battery of tests , too. I know with anti-neutrophil antibodies the test often yields false negatives and positives, which makes diagnosis even more difficult. I also have a feeling that, like Chirley, my medical situation is evolving and so I will have to be patient for awhile longer.

I know it would be incredibly rare for someone my age to have MDS, but I have Poland’s Syndrome, a congenital birth defect that affected my bone structure on the right side of my body. It seems there may be some evidence that patients with Poland’s have higher rates of leukemia.

My bone marrow biopsy report from Genzyme doesn’t seem to have a “Cytogenetics” section, but there is something about “markers” in the “Immunohistochemistry” section. There is a “chromosome analysis” but very little is on this page.

I think the chromosome anomaly you are referencing in cyclic neutropenics is ELA2; my hematologist is going to test for this if none of the other tests yield and diagnosis. I have been doing a lot of research, and it seems like cyclic neutropenics also have cycling monocytes. When neutrophils are low, monocytes are high, and there is no evidence of this with me.

As for hemoglobin, the last result was within the normal range, 13.4. I had one test in 2009 where my hemoglobin, MCV, MCH, and WBC were all low. Hm, they haven’t checked my copper levels. I’ll bring this up at my follow-up on Dec 16th.

The other thing I noted from the forums is that MDS often leeches minerals, like iron, from the bone marrow. So even if the levels are normal in the blood, the marrow may not be. Is this accurate? The lab was not able to find stainable storage iron during my bone marrow biopsy, but my blood iron (to my knowledge) is fine. Is this something I should be worried about?

Thanks so much for your response and take care.

Lauren

[Greg H]

Originally Posted by Lauren H

The other thing I noted from the forums is that MDS often leeches minerals, like iron, from the bone marrow. So even if the levels are normal in the blood, the marrow may not be. Is this accurate? The lab was not able to find stainable storage iron during my bone marrow biopsy, but my blood iron (to my knowledge) is fine. Is this something I should be worried about?

Hey Lauren!

A lot of MDSers don't have messed up chromosomes, but there are some abnormalities that often show up in MDS, which is why I was curious.

I'm not educated about iron stores and MDS, but can confirm that my BMBs have shown decreased iron stores, even though I have plenty of iron in my peripheral blood. My doc suggested adding iron-rich foods to my diet but not adding supplemental iron, since my transfusions are adding plenty of that.

Maybe someone else can chime in on the subject.

Keep us posted on your progress!

Take care!

Greg

[Chirley]

Hi Greg, just wondering are they treating your copper deficiency? If so, what are you having?

I've been in hospital for nearly a week with copper deficiency induced myelopathy. I have been unsteady on my feet for a while but I became unable to walk very suddenly last Monday.

I know the relationship between copper and pseudo MDS and was excited to think that I may not have MDS at all, but unfortunately my haem doc says I definitely have MDS.

I'm waiting for test results to check for copper storage diseases then, I may have some intravenous copper and maybe some IVIG.

Tea and cake has arrived.

Bye

Chirley

[Greg H]

Hey Chirley!

At first I was taking 4mg of copper gluconate per day, but my copper numbers continued to fall. The dietician at my transplant center did some more investigation and changed her recommendation to Chelated Copper. I buy Chelated Copper capsules manufactured by a company in Texas called Bluebonnet (the state flower). They contain 3 mg of copper bisglycinate chelate. I take two per day. I also take 25mg of chelated zinc per day. Even though too much zinc can inhibit copper absorption, apparently you need some zinc to aid copper absorption.

I don't know, at the moment, whether this is having any effect. I just had a copper test and should have the results next week.

The studies I've read generally call for IV copper in folks with really low copper counts.

Take Care!

Greg

[cathybee1]

Hi, Chirley.

Just wanted to let you know there's another one out here with low copper numbers. Bruce's are slightly depressed (at 61), his zinc was just a little bit above normal. Bruce has started taking a 3 mg supplement of chelated copper, but no added zinc except what's in his multi-vitamin.

Today he had a bunch of blood work to see if we can get a better handle on what's going on with the proteins & other minerals that are necessary for copper absorption.

[Marlene]

Taking vitamin C will aid in the absorption of iron. You can either take a supplement or be sure eat food rich in vit c at each meal.

Other things that can impact proper nutrient absorption from food is if you take any medicine for heartburn/acid reflux. A gluten intolerance will effect it also. Gluten problems can be hard to detect since many test result come out with a "false negative".

The other is an imbalance of gut bacteria. If there's too much bad bacteria, it can interfere also. A good probiotic will help that.

[cathybee1]

We just got the results of the second copper test back and Bruce's copper, since taking 3 mg chelated copper supplement has improved to 64.

Thanks for the information, Marlene. Bruce did discontinue taking nexium/prilosec which he has taken for 15 years because of GERD (despite the doctors saying there wouldn't be any hematological effect of his doing so) because of our concerns about absorption of minerals in the stomach being compromised by the new generation of anti-acid medications.