Confused with Bone marrow report

[teo]

Hi Birgitta-A,

Thanks for the information and also highlight the points that actually tx would not help in maintaining the WBC. I rechecked my mother blood test reports, i fully understand what you mean now

Thanks again for all the important information and tips about ferriprox, Exjade and Desferal.

[teo]

Hi all,

Some update for my mom. BT on 8/11/2012.

My mom has BMB today, Results will be out on 28/11/2012. CBC was checked after consuming Ferriprox for 10 days. From the CBC, seems like the WBC going up at the moment. The rest seems stable.

If anyone have experience with consuming the Ferriprox increases the WBC, please do share the info with me. Thanks. I dont know whether this is a good sign or not. We will keep monitoring the WBC.

[teo]

Hi all,

Update about my mom 3rd BMB results. Based on the BM aspiration results, the hema thinks my mom has PRCA now. But we have to wait for the BM Trephine Biopsy results to confirm i guess as this will take another 2 weeks.

Attached pls find my mom latest BMA results. If you have any comments or thoughts on the results, much appreciated if you can share with me so that i can ask the doctor when we meet him again on 8th Jan 2013. Thanks in advance.

I will update the Biopsy results once i have them. Much appreciate if someone can help me to interpret the latest results. Try to understand more whether the present of "Granulopoiesis", "Lymphopoiesis" and others showing that there is improvement on my mom's BM or the other way. It seems to me they found more "things" on my mom's BM this time. Thanks.

Bone Marrow Aspiration - 2nd BMB from the private hospital
1) No fragents obtained
2) Smear was hypocellular with occasional myelocyte, neutrophil and normoblast (幼红细胞) seen
3) No blast noted
4) Iron stores were not assessable

Interpretation - Hypocellular marrow

Bone Marrow Aspiration - 3rd BMB from the goverment hospital
1) Only 1 fragment available & it is Hypocellular, the cell trail is very hemodiluted
2) Erythropoiesis : No erythroid precursor seen
3) Granulopoiesis : Present
4) Lymphopoiesis : Present
5) Megakaryopoiesis : No Megakaryocytes seen. Platelet falkes noted
6) Perl stain : Iron store reduced

Interpretation - Very hemodiluted BM Aspiration with no excess blast or obvious dysplastic picture seen

[Birgitta-A]

Hi Teo,
Good that your mother not is getting any treatment except txs and Ferriprox without a dx!

I don't know much about results from BMBs but I don't think these results give much info. Your mother has hypocellular marrow (few cells) and no blast cells (immature cells - more than 5% is a bad sign). Very good that they don't find any obvious dysplastic (mis-shaped) cells indicating MDS.

Erythropoiesis means making new red blood cells.
Granulopoiesis means making new neutrophils (the most important white blood cells).
Lymphopoiesis means making new lymphocytes (a kind of white blood cells).
Megakaryopoiesis means making the kind of cells that make platelets.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Hope you are well. Thanks for the explanation about my mom's BMA.

If anyone want to add more comments on what i wrote below, you are most welcome to do so. The below is what i understand so far.

1) Erythropoiesis means making new red blood cells.
As my mom BM does not have erythroid precursor. That's pretty sure my mom BM doesnt produce any RBC. Maybe because of this, the Hema (quite young) told my sister that my mom has PRCA, i guess as my mom WBC & platelet are okie so far. Anyway the hema says he needs to discuss with his senior hema (mentor) to conclude my mom case after they have both of the BMB results.

2) Megakaryopoiesis : No Megakaryocytes seen. Platelet flakes noted
As Megakaryopoiesis is related to making the platelet, according to the BMA, there were No Megakaryocytes seen. Platelet flakes noted. How come my mom's platelet is always good if there were NO megakaryocytes ? Will ask the hema about this.

3) Perl stain : Iron store reduced
http://www1.imperial.ac.uk/departmen...images/slide9/

Based on the link above, it seems my mom might have iron deficiency anemia, but will confirm with the hema again.

Just wondering anyone know about the below. What is that means by the cell trail is very hemodiluted ? Thanks in advance.
4) Only 1 fragment available & it is Hypocellular, the cell trail is very hemodiluted

The hema actually mentioned about EPO might help with my mom case, I found out from the web (http://www.mds-foundation.org/patient-handbooks/) that there were 2 drugs available to stimulate the BM to produce RBC. One is EPO (Epogen, Procrit) and the other one is Darbeprotein (Aranesp).

Hi Birgitta-A, i saw in a thread that you mentioned about the post reports of EPO treatment, can you send it to me please. Thanks.

[Birgitta-A]

Hi Teo,
Remember that your mother still doesn't have any dx! It can be very dangerous to start treatment in her case.

Your mother's bone marrow is producing both RBC and platelets even if they didn't see any precursors in that BMB. She has few cells and it is difficult to understand what is going on in her bone marrow.

I don't know anything about low iron stores and high ferritin as in your mother's case.

Hemo diluted means diluted with blood.

Here is info about the combination of EPO and the growth factor for WBC G-CSF http://www.ncbi.nlm.nih.gov/pubmed/15840690
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for the EPO links.

Yeah i totally agreed with you. We will see what the hema says after they have both of the results (BMA + BMB). At the meantime, one of the hema mentioned about PRCA after looking at the BMA results.

Actually i am a bit confused about the iron store reduced in the BMA results as my mother now having the Ferriprox to get rid of the iron overload.

For sure i will find out from the hema about all my doubts plus any other tests to be sure that my mom is PRCA and No MDS or other illness.

I need some advice on this just in case i need to make a decision if the hema propose on "EPO + drugs" to try at the beginning stage. Do you think i need to seek another advice in "centers of excellence (singapore)" first before continue with the EPO treatments ?

[teo]

Hi all,

Further updates for my mom BM Trephine Biopsy results.

Microscopy:
Small core of trephine biopsy showing fragmented bony trabeculae with intervening marrow tissue. Few areas are haemorrhagic and not suitable for assessment. A few cartilage seen with few areas are acellular while the others look hypocellular and present of all the hematopoietic cells. No excess blast noted. However this trephine biopsy is suboptimal for interpretation.

No increase in reticulin.

Interpretation:
Inadequate sample for interpretation

As the hema mentioned that there is no way to interpret my mom BM results, the hema was suggesting continuing with the BT ONLY. When i asked what other ways to diagnose my mom illness, the hema mentioned about the BMB again but the hema is hesitate to do it as he thinks the results will be the same as per the 3rd BMB. Basically it is up to us to decide.

FYI. My mom has went thro 3 BMB's and so far we knew that both (we have 2 of the BMB results) have almost the same results, no conclusive answer/results. To be honest, i am not sure whether we should go for the 4th one. Any thoughts/ideas are most welcome.

As i continue bothering the hema asking for any other treatments possible for my mom, finally the hema said we can try "erythropoietin 0.5ml" "epoetin Alfa 2000" for 3 months. As the costs is expensive for this medication, the hema told us that actually my mom needs 40,000 but he can only prescribe 2000 * 3 times/week which i think it might not helps my mom. Anyway we will try and see how is the outcome. The hema mentioned about Danazol if the erythropoietin doesnt work for my mom.

I dont know whether i do the right thing for my mom or not as i kept bothering the hema and finally he agreed to try the EPO and might be Danazol later on. Should i stop all these treatments as the BMB results is still not conclusive. Any thoughts/comments are welcome.

If anyone in the forum have any good idea on how i can proceed with my mom illness, please do share with me. All the comments/ideas are most welcome and appreciated. Thanks.

[Birgitta-A]

Hi Teo,
You know I have only studied MDS - not AA and other bone marrow diseases. As far as I understand EPO-drugs could be OK for your mother - remember that more patients respond if EPO-drugs are combind with Neulasta or similar drugs. A low EPO dose can be effective for her because she is small and have hypocellular bone marrow.

If I was your mother I should go to a specialist in Singapore - perhaps they can get more material from a BMA and a BMB.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for advice.

As the hema is reluctant to try anything on my mom besides BT ONLY, i presumed at least i managed to get EPO for my mom. I have told the hema as well about the EPO + G-CSF drugs or similar drugs might improve the chances to stimulate better the BM but the hema asked me not to rely too much on web site info as the web are trying to sell their products. I told the hema that i got all these info from the forum that most of the patients have experience MDS, AA or PNH. Then he keep quiet.

Actually i have been thinking of bringing my mom to "mds-centeres-of-excellence in Singapore" for further advice. Will wait and see how is the outcome from the EPO injection first.

The hema actually is very pissed off with me, so he even asked me to get further advice somewhere else as i kept asking him questions . That's my case. The hema just spent about 10 minutes with a patient but with me, he has to spend more than 45 minutes.

[Birgitta-A]

Hi Teo,
Too bad with a doctor, who is a specialist in uncommon diseases like bone marrow failure diseases, to be so inpatient with patients and relatives! Good that you continue to support your mother.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Yeah i am upset with the hema as he promised my sister that i can ask him any question when i am back and paid him a visit.

i dont understand why they cant accept the patients and their relatives have the right to know more about the disease. I felt the hema anger as he kept asking me, any more question in a very impatient tune. I told him that i want to know more about what other check or treatment that might help my mom to at least extend the time for the BT or finding out what wrong with her. The only answer he gave is your mom is quite old and her BM is not producing enough RBC, we cant do much. If we insisted, one more BM test but very unlikely will get different results.

He is nice to my sister and most of the patients as they hardly asked question.

The worst thing is we told the nurse to inform the hema that we wanted to see and talk to him but instead the hema asked the trainee to give us counseling. At that point I know he doesn't want to do further checking for my mom even there were no conclusive results from the BMA and BMB.

As this is a government hospital, I don't expect to get good service from them to be honest but still I feel uncomfortable and upset.

[Bambam]

Hi Teo, my WBC are still within normal range, although the numbers are trending down and my platelets, previously normal, are now raising with each blood test. My RBC and Hb have been low all along. I don't see any sign of the word "mitosis" in my BMB report. More blood tests next week, so we shall see what is happening this time. I don't understand why my platelets are increasing after being normal for so long.

[Chirley]

Hi Teo, I have recently changed doctors and I have found that if I ask the new doctor questions that she can't answer she tends to get a bit cranky and defensive. I talked to my GP about this and I've been told to be a little more patient because some doctors feel inadequate if they don't have all the answers.

Doesn't help me but makes me a bit more understanding of their feeling of inadequacy.

Sometimes there are just NO answers.

Frustrating isn't it?

Regards

Chirley

[teo]

Hi Bambam,

I guess it is good signed if you did not see "no mitosis" in the BMB report. Please do share with us about your next blood tests.

About your increasing platelet, Maybe u can ask the hema to find out.

Just wondering do you have BT at the moment ?

[teo]

Hi Chirley,

Actually it is okie if the hema tell me they don't know or they dont have the answer. I can accept that. I don't think all the hema knows about all the questions that the patients or their relatives might have. I think it is abit not right if they get angry because they r inadequate. Just my thought.

[teo]

Hi all,

Just wondering anybody have any good ideas/ways to make the vein on the wrist be more easy to find or see. I bring my mom for BT today and the nurses (4 of them) cant find the vein on the wrist even they tried for 4 times (2 times on each hand), my mom was crying because of the needles in and out. it must be very very painful.

According to the nurse, my mom skins is a bit "Wrinkle and moving", even they can see the vein but when they put the needle in, the vein is not there. so it is hard to get the vein. Finally they put the needle on the elbow vein.

I have a chat with one of the nurse asking her why they dont go for the easy vein, for my mom, it was on the elbow. According to the nurse, this is the practice as they have to try both of the wrist first before trying the vein on the elbow. Just wondering is this true ? If you know any reasons behind this practice, please share with me. Thanks.

[teo]

Hi all,

My mom has EPO injection for around 3 weeks now, she has put on weight for around 1.5kg, just wondering is the weight increase caused by EPO and whether this is normal ?

FYI, my mom has ferriprox around 2 months, I don't know whether ferriprox is the reason behind of the weight increase or not. If anyone have any thoughts/comments of this, please share with me. Thanks in advance.

[Birgitta-A]

Hi Teo,
Many patients - like me - have a port-a-cath inplanted for transfusions and drugs. I got mine Jan 2007 because I was transfusion dependent and should start with the iron chelating drug Desferal intravenously later on. The port has been OK during 5 years now though I really don’t need it today since I don’t get any transfusions now – it is flushed once a month.
http://lookingforcure.org/index.php?...rapy&Itemid=55

I don't know if we can gain weight when we get EPO drugs or Ferriprox - in any case it is a sign of improvement if your mother doesn't have swollen feet or other symptoms due to too much fluid in her body.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for the tips and info. Appreciate that.

About the implant, actually I am not sure whether it is good idea to do it right now as my mom needs BT only once a month. Will consult with the doctor. Thanks again for the good info.

[teo]

Hi all,

My mom has been on EPO for almost 2 months now plus as usual 2 packs of RBC/month but last month we noticed that her Hg has dropped a bit compare to the month before.

Normally her Hg is around 6 plus and after 2 packs of RBC, when tested again 1 week later, it will be around 9 plus. From last month, her Hg was 6 plus and after 2 packs of RBC and tested again 1 week later, it was 8 plus. Basically the Hg go down faster than before. We asked the hema, is it because of EPO, the doctor says it should not be. If anyone have experience this before, please kindly share the information with me. Thanks.

This month, she went for blood test, her Hg is 5 plus before the BT, it seems every week the Hg will go less by 1, which is the same as before but my mom doesnt complained about tiredness, heart beat pumping faster or etc. She just feels sourness on her legs last 2 days before the BT. When we look at the outcome, it seems she is doing better than before as normally one week before the BT, she has the symptoms already (Tiredness, heart beat pumping faster and sourness) but now she only has sourness on the legs 2 days before the BT and nothing else. Anyway i am still worry about her Hg. If anyone has the information about this scenario, much appreciated if u can share with me.

from the recent BT (few days ago), the nurse mentioned that they have problem matching the blood type and etc for my mom, i dont know how hard they try to be honest. They only provide one pack of RBC to my mom but she will get another one few days later from now as insisted by my sister. Just wondering is it true that along the time, the BT will get tougher, i mean the blood matching part and finally there is no other options available besides waiting for the time to come. Can someone please kindly advice me on this.

I have another question, is it normal that the Immunophenotyping is not performed because Smear showed no excess of Blasts ? I saw this in one of my mom's reports.

Additional info : I bought "kale" products from Japan for my mom. It was a supplement. I am not sure whether this supplement help her to be healthier or not but she consume this just last month and still taking it now.

About the Hg going down a bit faster last month, just my personal guess, as my wife delivered a baby last month, so my mom has to do most of the house chores herself, this might get her Hg going down faster than before. I dont know this theory make sense or not.

Kale website if you are interested.

http://translate.google.com/translat...F657640-1.html

Have a nice weekend to all.

[Birgitta-A]

Hi Teo,
It is very common that Hgb decreases when the bone marrow function decreases in MDS patients. Your mother's Hgb is much too low at 5 plus - even if she doesn't feel tired the heart has to work very hard and she will develope heart insufficiens.

The EPO drug doesn’t have much effect - perhaps it could be combined with a drug for low white blood cells called G-CSF (Neupogen or Neulasta). http://bloodjournal.hematologylibrar...106/3/768.full

She should have more frequent blood transfusions and 2 units every time - good that your sister insisted. Many patients (like me) have irregular antibodies and it can be very hard to find blood for us. I have to leave blood for the test one day before the transfusion because it takes hours to find blood for me.

Then they should consider iron chelation because her ferritin value will increase.

I am still not sure that your mother has MDS with dysplasia in her bone marrow. Perhaps immunophenotyping could increase the possibility for her to get a diagnose.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719025

Household work can not decrease Hgb – in fact it is important to not rest too much.

Kale is good for most persons but if the platelets are low we should avoid kale and many types of food and drugs that increase the risk for bleeding like green tee, garlic and so on.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for the prompt reply.

About the Hg, as i read from the forum, some people are okie with low Hg. For my mom case, meaning to say with low Hg, she is prone to develop heart insufficiency. Thanks for pointing out this. I will ask my sister to get more frequent BT for my mom (Maybe 2 packs/3 weeks)

About the EPO + drug, i dont think the Hema will do it as he is hesitate to even give my mom the EPO 2 months back. I ask before about the combination of the drugs, the hema says the medicine is very expensive, they dont simply prescribe this to the patient if really necessary.

Actually my mom always go one day before to get the blood tested and the BT only happened the day after. That's why i am saying, i dont know whether the hospital try hard enough to get the 2 packs ready or maybe they are lacks of blood, this might be one of the reason as well. Anyway the hospital just say that they have problem to match the blood type for my mom, that's all.

About Ferritin, is it okie to have this test every 3 months as this is what the hospital did now.

About for the BMB tests before, as all of them (3 in total) showing there were Inadequate sample for interpretation, that's why till now we dont know whether my mom is having MDS or not. BT is the only option for her at the moment.

About thinking of household work might decrease the Hg is because i thought if she worked too hard, the blood will flow faster and she will get tired faster as the heart needs to work harder as well. I always heard that MDS patients need to rest more, meaning to say they can do something light but not too hectic.

Thanks for the tips on Kale, i will monitor my mom platelet and WBC. So far her platelet and WBC are okie.

[Birgitta-A]

Hi Teo,
Yes, now I remember that Neulasta and similar drugs were too expensive.

The liver will try to take care of the iron overload as long as it can - then the liver tests (ASAT and ALAT in Sweden) will start to increase. If they follow your mother's liver tests it is perhaps enough to follow the ferritin value every 3 months. I have liver tests and ferritin controlled every month.

Exercise (including household work) is supposed to be good for all kinds of patients. It is good for the heart to work but not because we have severe anemia. http://haematol.highwire.org/content/96/10/1433.short
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Actually every month, my mom has the blood test. It includes the liver and kidney tests and etc.

ALP (Alkaline phosphatase )
Albumin (Liver function)
ALT (Alanine transaminase) - Liver
LDH (Lactate Dehydrogenase)
Creatinine (Kidney Function)

About the immunophenotyping, i dont think i want to bring this up again as in one of the reports, it says as "Received markedly haemodiluted bone marrow EDTA sample for immunophenotyping, Smear showed no excess of blasts. Therefore immunophenotyping was not performed". I believe if i bring this up, the hema will ask me to seek for 2nd advice somewhere else .

I will take note that this is one of my question to the singapore Hema when i bring my mom to see them. Thanks for pointing out this.