Need help deciphering some terms in BMB results.

[Meri T.]

I posted this under MDS, but think it better under Q&As. I really need help deciphering some terms in my MDS lab test results.

Thank you Baile, Neil, Dan and John for your advice on what to ask the Doctor after being diagnosed. I have written them all down in note form, prepared for my next appointment.

While waiting for the next appointment, I have tried translating on my own the BMB/BMA results. Really appreciate some help here, I don't understand half of these terms, even with google:

(3) Slightly hypocellular bone marrow
(4) Myeloblasts seen as 5.6%, from small to slightly big, by nucleous net (?)contains nucleolus.
Dysplasia seen in degranulation etc., neutrophil chromatin blocked.
(5) Erythroid series
Dysplasia seen in non nuclear shaped, multiple nuclei, karyolysis etc.
Fission image 1.0% and slightly outstanding
(6) Lymphoid series
slightly decreasing
(7) Megakaryocyte
decreasing
small shaped megakaryocyte seen
(8) Others
macrophage not outstanding but a few hemophagocytes can be seen.

Diagnose: MDS, RAEB1

Translation is my own, so there might be some unintelligible
phrases. Really need help with the meanings.Thank you.

Another point is that I have this list of like:
Myeloid series
promyelocyte 1.6
myelocytes 15.8
metamyelocyte 9.4
........
basophil 0.2
Then the total M series 62.8

And then the Erythroid series
pro erythroid 0.0
....
Total E series 25.4

Then the lympas....
and finally M/E 2.47

Neil cleared the meaning of M/E for me, which took a lot of my mind. Besides deciphering the lab results, where can I get the list for the Normal range of M series and E series...? Or should I just accept that my M/E is normal, so stop worrying about the details in the list?

Please help. Thank you.
Meri

[Hopeful]

Hi MeriT,

I am sorry to read that increased blasts were seen in your marrow. Given your young age and slight hypocellularity (#3,6,7), I would discuss with your doctor whether there could be an immune component to your condition.

Did you have cytogenetics done?

Also, be sure to have testing done for heavy metal poisoning, if this hasn't been done already. Also look at any medications/supplements that you are taking. I am just hoping that this is something besides MDS!

[Meri T.]

Unfortunately it is MDS, the hematologist stated the results showed no doubt about it. There were even photos of the purple stained blasts and megas... The DNA gene results were fine though.
WBC, RBC and Plts all low. My blood counts will be checked EVERY MONTH, The doctor also stated sometime this year I would be admitted for one week, to check for diseases... I didn't quite get why they needed a week.
Any suggestions?

I wear a mask when I go to to work (think Tokyo commuter trains at rush hour!) and wash my hands a lot. Hard to keep the house clean with an energetic 11 year old around.
Thank you Hopeful for your suggestions, I will definitely look into it.
Meri

[bailie]

Meri, has anyone mentioned a stem cell transplant yet?

[Meri T.]

Bailie, thank you.
I didn't catch the wording "stem cell transplant", I heard "transplant", and the doctor mentioning looking into Donor banks. When I let him know of my other 4 siblings, he said their blood could be flown in for testing instead of them flying all the way in.
Hopeful, cytogenetics results came out OK, I think : 46,XX[20]

I had always thought after being diagnosed with MDS, patients had a few years before being admitted. The doctor said it varies from patient to patient, but in my case it was going to be a MONTHLY blood check, and admittance in the near future.

My symptoms now are: easily fatigued, sinus migraines, nausea (indigestion?) and excess menstrual bleeding (the doctor said from having low platelets). For the fatigue, I can rest; the periods only come every few weeks, but the NAUSEA is getting to me. I googled "MDS and nausea" but nothing much came out. I am lactose intolerant, so maybe ice cream, eggs, ramen, etc should be deleted from my diet. Any practical advice on this area would be really appreciated. Thank you.
Meri

[Meri T.]

I forgot to mention I have iron overload, and low iron binding capacity. Does that have something to do with my nausea?
Meri

[bailie]

Meri, I am not a doctor but I would be surprised if the MDS and your digestive system problem were related. My doctors started talking stem cell transplant at my first diagnosis(RAEB-II). They started me (injections) on a drug called Vidaza (azacitidine) immediately. I was on this drug for eight months to get my blast count under control and my red, white and platelets in an OK range. It is best to go into the transplant in as good of health as possible. Perhaps you won't need a transplant. Keep in mind also that the younger a person has the transplant, the better the chances for a positive outcome.

As a side-note, my stem cells came from a 20 year-old male living in Germany. They flew the cells overnight and I got them the next day. They had tested for a match previously. I went into the transplant with A+ blood type and came out with O+ blood.

[DanL]

Meri,

Let me try and help with some of the terminology:

(3) Slightly hypocellular bone marrow - this means that your bone marrow has less cellularity, or density than expected for your age. Generally, doctors use a rule of thumb that takes your age from 100 to estimate what your cellularity should be. So in my case I am 42 years old, expected cellularity would be around 60%, give or take maybe 10% due to sampling error and individual facotrs, etc. When you are hypocellular, your existing marrow would have to work harder to produce blood cells, and typically will not produce enough for you to stay in an overall healthy range. As Hopeful suggested, hypocellular marrow is sometimes associated with an immune attack against your system, so sometimes immune suppression is used to treat the MDS as a first line treatment. That being stated, I have also read data that suggests that hypocellular patients can do better with transplant than the normocellular or hypercellular patients.

(4) Myeloblasts seen as 5.6%, from small to slightly big, by nucleous net (?)contains nucleolus. - Myeloblasts are a particular type of immature white blood cell that is in the marrow and sometimes in the blood stream. In the marrow, you are considered normal if you have less than 4% myeloblasts or blasts in the marrow. With normal marrow and immunity, these cells are destroyed or mature completely prior to going out to the blood stream. White blood cells normally do have a nucleus. When the nucleolus malfunctions, it can lead to disease.


Dysplasia seen in degranulation etc., neutrophil chromatin blocked. - dysplasia simply means abnormal, and degranulation is an abnormality in your granulocytes, which is another name for white blood cell components like neutrophils, eosonophils, and basophils.

(5) Erythroid series
Dysplasia seen in non nuclear shaped, multiple nuclei, karyolysis etc.
Fission image 1.0% and slightly outstanding

The erythroid series refers to your red blood cells. Again, the presence of dysplastic cells means that they are abnormally formed. Having any nuclei in mature red blood cells means that they are malformed as mature red blood cells should not have nuclei. karyolysis is the destruction of the cell from within.


(6) Lymphoid series slightly decreasing - this indicates that your lymphocyte count is dropping to lower than normal levels most likely, but without data I cannot be sure. Your lymphocytes are responsible for identifying disease and creating antibodies to fight the disease they basically train other white blood cells to attack and mount an immune response, so reduced lymphocyte count means that it may take longer than normal for your bodies defenses to be fully mounted.

(7) Megakaryocyte decreasing small shaped megakaryocyte seen - megakaryocytes are the precursors to platelets. 1 megakaryocyte can produce up to 1000 platelets, which are actually fragments of megakaryocytes. I am not sure as to the implication of small megakaryocytes. I believe that they are normally larger in size.

(8) Others macrophage not outstanding but a few hemophagocytes can be seen. - hemophagocytes are cells that attack blood cells - i don't know any more than that, other than it is an unusual finding.

Diagnose: MDS, RAEB1

Translation is my own, so there might be some unintelligible
phrases. Really need help with the meanings.Thank you.

Another point is that I have this list of like:
Myeloid series
promyelocyte 1.6
myelocytes 15.8
metamyelocyte 9.4

the three above items are white blood cell precursors that are normally found in the marrow that hopefully mature prior to entering the blood stream. You do see an increased number of them in the marrow and blood stream when the marrow experiences stress, whether it is related to bone marrow failure, or something as simple as an infection like a severe cold, the flu, or bronchitis for example.
........
basophil 0.2 - off hand, this looks like a normal basophil number, but I did not check.

Then the total M series 62.8

And then the Erythroid series
pro erythroid 0.0
....
Total E series 25.4

Then the lympas....
and finally M/E 2.47

I would not worry a whole lot about the m/e ratio as even if the ratio was good, if you have low blood counts, your ability to function normally might be impacted.

Some of the numbers that a lot of people follow closely - although they all have some value are the following from your peripheral blood counts:

WBC - normal range is around 4k to 10k. within this count, neutrophils, lymphocytes, basophils, eosonophils?, monocytes, and nucleated red blood cells show up here. Doctors get a little concerned when your neutrophils drop below 2k, others at 1500 total count as you become more prone to infection. Normal lymphocytes starts at 1k and I don't know the upper limit. The others aren't usually followed too closely unless they are way high.

RBC - total count of around 4.2 to 5.4 million cells per microliter of blood.
HGB (hemoglobin) - normal range is around 14 to 18. Transfusions usually don't happen until this drops to around 8. If it is really low, you may feel very tired and out of breath.
HCT (hematocrit) normal range is around 40 to 55 or so. It is roughly 3 times the HGB number just for a frame of reference. Transfusions seem to occur around a low of 25.
Platelets - normal range of 140k to 400k approximately. Anything over 100k is pretty good, you can live well above 50k, and transfusions may occur anywhere from 10k to 20k, depending on your other clotting factors, activity level, and risk of bleeding or injury.

All of the other numbers have some value, but may not really impact your quality of life, so it seems that doctors don't pay much attention to them on a week to week or month to month basis unless a trend becomes apparent that is separate from the numbers above.

Again, I apologize for a long response, but hope that it is helpful. Keep asking questions, but try not to drink from the firehose. Take a few minutes a day to learn about a little bit, then ask questions as they come up, and keep that list growing for your doctor.

Dan

[Meri T.]

Thank you Dan for your help.
Your answers helped clear my mind.
Ironnically I feel calmer, since I know now my situation and what I'm dealing with.
Meri

[Hopeful]

Hi Meri T,

I'd encourage you to watching this video on MDS by Dr. Roboz. It is an excellent introduction.

https://www.pathlms.com/aamdsif/courses/775

DanL's explanation is great. The only comment that I would have is that a normal HGB level for women is lower - around 12.5-15.5 depending on the lab.

A monthly blood check is not unusual. You will want to know what is going on.

If you are lactose intolerant, and many people are as they get older, you will want to avoid all dairy products (milk, butter, cheese, ice cream, etc). Eggs and raman are fine. Some people are allergic to other proteins in dairy besides lactose, so it is best to stop all dairy products initially to see if things improve for you. If they do, you can try lactose-free products and see if these can be tolerated. If things don't improve with stopping dairy products, something else could be going on. Some autoimmune conditions can also mess up your GI tract.

Your case seems complex, especially given the unusual iron abnormalities and normal cytogenetics. Are you taking any medications or supplements?

It is good that they are going to do more thorough testing of your organs. They need to determine the cause of your abnormal iron levels. Keep asking them about it.

I hope you find some answers!

[Meri T.]

Thank you Hopeful,
I will ask the doctor about this.
On top of that my urinalysis came out positive for occult blood. Is that a norm for MDS patients? I mean, since my platelets are low, so I guess inside bleeding is a norm?
Meri

[Hopeful]

Having a platelet count in the 70's is actually pretty good in the bone marrow failure world. You shouldn't expect any unusual, spontaneous bleeding, unless your clotting factor is abnormal.

Have you been checked for a UTI?

[Meri T.]

Bailie,
After hearing that your donor's blood was flown in from Germany, I'm researching to see how I can know if my siblings are a match or not. The doctor mentioned that their blood could be flown in to Tokyo for testing. I have two in Vietnam, one in Australia and one in the US.

Actually I'm Vietnamese, born '65 in Saigon, and research stated that belonging to the "ethnic minority", the percentage of finding one in the Donor bank is lower, siblings will have a higher percentage of being a match.

I will ask the doctor about the procedures because I don't want to be caught waiting because of any technicalities.
So I was wondering if anyone on this forum has been through the procedures of testing overseas siblings for a match?
Meri

[bailie]

The doctor (or the place he works) in Japan should be able to handle all of the testing and how to do it. Often it comes down to how good is your insurance/health care. It is expensive.

[Barbara K]

Hi, Meri T--I don't have anything substantive to add regarding your treatment options but was intrigued to learn that you were born in Saigon in 1965. Do you have any idea if you might have been exposed before you left Vietnam to toxic chemicals--namely dioxins? Best wishes, Barbara.

[Meri T.]

Barbara,
If by dioxins, you are alluding to the Agent, then yes, we lived it. However, since being diagnosed, I am concentrating more on the treatment rather than the cause.
Thank you for noticing.
Meri

[Barbara K]

Hi, Meri T--Yes, I was alluding to Agent Orange. I'm very, very sorry about what you (and countless others) did experience and certainly respect your decision to focus on how to go forward in securing the best possible treatment. I'll keep you in my thoughts. All best, Barbara.

[Meri T.]

My Xray results came back from my annual check for Lung cancer. It stated that they "suspected" something, and that I needed to be checked again at any hospital to "see the progression" (translation my own) of what they "suspect".
This same clinic found low blood levels, which recommended me to check at a hemotologist, who diagnosed me with MDS.
Now they have "suspected" something in my lungs, and recommending me off again !
This cannot be happening to me! I know I am in total denial, but maybe, just maybe it could be latent TB which is resurfing due to my low immune system. TB is preferable to lung cancer, right?

I do not smoke, neither does anyone in my family. My workplace is rampant with TB, so that's what I'm hoping for.

My symptoms are an itchy throat and in between my lungs. I've always thought it was because of all the cold drinks, it IS summer. I have night sweats, burping and nausea.

Next week, I will have my lungs checked at the same hospital as my MDS treatment. That way, all my data can be at the same place.
Scared is an understatement. I think I've lost it. Please, could someone help me clear my mind?
Meri

[Barbara K]

Hi, Meri--Sorry about this additional worrisome news. I have a relative who had lung cancer, and his most obvious symptom once he became symptomatic was coughing--serious coughing, painful. An itchy throat sounds more like allergies to me. Night sweats could perhaps be (peri)menopause related? Ditto for nausea. Or, yes, perhaps the symptoms are from latent TB, but maybe not.

I don't mean at all to minimize your fears, in other words, but this could be a false alarm. After my husband turned up with pancytopenia and was subjected to a battery of tests to try to determine the cause, his CT scan revealed some kind of granulomas in his lungs (I think that's what they were called), but they were considered a benign condition and evidently are not uncommon.

It's really hard in the initial days after a diagnosis not to go into a hyper-vigilant state of constant worry and assuming the worst. If this does turn out to be a false alarm, perhaps you can focus on educating your caregivers on developing better strategies for conveying information. My husband's initial hematologist conveyed incomplete initial information to us over the phone, which left me having a completely needless panic attack in the middle of the night. We decided he was too arrogant to be educable and instead sought out a different hematologist.

take care, barbara

[PaulS]

Hi Meri - Finding "something" in a chest x-ray in a clinic does not mean you have cancer - I'd assume it is nothing serious until told otherwise. My general rule is to try not to worry until there is definitely something to worry about - there will be many tests and such down the road that are worrisome but turn out to be nothing - You have enough real stuff to worry about without worrying about stuff that may or may not be signifiant. They found all sorts of stuff in my scans and X-rays pre transplant that meant nothing but were noted anyway. Stay strong and positive!

Best, Paul

[Meri T.]

Thank you Barbara and Paul.
I have set up an appointment Monday morning with the clinic doctor to collect my Xray and recommendation letter. Then will go straight to the Hospital, they have an Internal respiratory department besides Hemotology, newcomers appointment on Monday afternoon.
I think I should tell the Respiratory about my MDS, so that any drugs they prescribe can be taken into account. I heard that anti-biotics will lower my already low WBC.
(WBC 2.8)

Should I give them a print of my recent blood counts just in case? I don't know how inter-departments in hospitals work, so is it the patients job, or could I ask them to cc a copy of the new xray findings to the hemotology dept? I really don't know how doctors from different departments communicate. Any ideas?

After Monday, I will surely have more questions when I know what it is they "suspect" my lungs have. Please bear with me.

By the way, Monday is my birthday, 51. What a way to spend a birthday.
Thank you Barbara and Paul for helping me to focus on my priority, MDS.
Meri.

[bailie]

You should always help in any communications even if it is redundant. Doctors often have information overload and once in a while things get overlooked. It is generally the pharmacist that catches the conflicts in prescriptions, but you need to pay attention.

Paul is correct. There likely will not be a problem. If there is a problem learn as much as you can about it.

[Meri T.]

And I brought my xray from the clinic and went in to the respiratory department, but the admin sent me to the hemotologist first, who took a look at the xray that the clinic had sent on with their suspicions of " a previous lung infection that has resurfaced". He just shrugged it off, and wrote a note to the Respiratory doctor saying that this xray of his MDS patient came from a local clinic, but he thinks its a "shadow", meaning a technical smudge. Then he went on to say since I was here (my appt with my hemotologist is not until next next week), besides an xray, he wanted me to get a CT scan so we could stay on top of any obstacles for my MDS treatment. Then he sent me off to the Respiratory to get me checked out.

The Respiratory doctor pointed out what Paul and Baille mentioned, that I had more stuff on my plate with MDS already without having to worry about what the clinic people suspected. But she eased my mind by testing, and ruled out lung cancer, lung infections, and even latent TB. She promised to relay my results back to the clinic, and of course, my hemotologist.

Blood test found me allergic to cedar pollen. Confirms the itchy throat. But she advised checking with the hemotologist before taking any anti-histamines. My CT scan showed 2 small spots on either lungs, too small to worry about, so another CT to show if it grows or not, will be in 3 months time.

So I learned that whatever symptoms I had, I would always have to check in with my hemotologist. Is this normal with MDS patients?
Meri