Confused with Bone marrow report

[Birgitta-A]

Hi Teo,
How are your mother's liver tests?

LDH is interesting because it will tell us if the disease is progressing. http://annonc.oxfordjournals.org/con.../annonc.mdm595
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

I attached my mother's CBC results for 2012 and 2013. I did not have some of the info for the CBC as most of them are provided by my sister. FYI, some of the hospital nurse sometimes does not want to release the CBC report.

I did not manage well about the CBC results for year 2012. I hope i can manage better for 2013 as now i split the results into 2 (Kluang & JB). FYI, my mom go to local hospital for BT (Kluang), they did the simple CBC tests and normally within a week, she needs to go to state hospital (JB) for follow up where they did more complete CBC tests. We need to get the ferriprox and EPO from the state hospital as well.

Based on 2012 and 2013 CBC results, it seems to me the 1st time my mom Creatinine is out of range on 9th Jan 2013, I asked the hema but he says it is fine, they will monitor. I noticed the ALT is improving for the 1st time on 9th Jan 2013.

If you have any opinion or suggestion after looking at the CBC 2012 & 2013, please do let me know, i am open to any suggestion and comments. Thanks in advance.

[Birgitta-A]

Hi Teo,
All test results seem OK for me except very high platelets on one occation - probably only something wrong with the figures. Then the very low Hgb recently isn't OK.

I don't think a low creatinine value is dangerous - when the creatinine is increasing it shows that the kidneys don't work as they should.
Kind regards
Birgitta-A

[teo]

That's what i am worry about now, low Hg from last month. Birgitta-A

I dont know what else i can do for my mom at the moment as i plan to bring her to see the hema in Singapore maybe around April now, earlier than what i had plan before.

As she is phobia to needle, so i tried not to ask her to go for BMB too often, i guess the hema in singapore for sure will do one more round of BMB, i can say this is our last hope to find out what caused my mother's anemia.

[teo]

Hi all,

I just get hold of my mom 4th bone marrow report. As one of the report is not cleared, so i need help from this forum to guide me through the report. What is the missing words for the Histopathology Report attached. My sister has been arguing with the nurse but it doesnt help. The nurse just says the report is like this from the Hema, they cant do anything about it. Goverment hospital .

If anyone understand what is the meaning of the whole/part of the report, much appreciated if you can share the details with me. Thanks.

I will upload my mom CBC report for the past few months here as well for your perusal. Any comments is most welcome! Thanks.


cheers
teo

[maggiemag]

It looks to me that they are telling you the truth! While the bone marrow sample was not optimal, it shows no cytogenetic changes, which is really good. The marrow is hypocellular but probably expected at her age? It seems to show that the marrow is producing all cell lines. Her anemia doesn't seem severe, although I am confused with the different columns. Does it run 9-10 or 7-8? Her anemia is normocytic with a normal MCV, which is good, as MDS is macrocytic, and anemia from blood loss I think is microcytic. There is something called *anemia of chronic disease*, and tends toward normocytic. Does she have any significant chronic diseases like rheumatoid arthritis? She doesn't have chronic renal failure which can also cause anemia of chronic disease. Her other labs are good. Her RBC is not bad although below normal, for someone tx dependent. I don't have any other ideas, sorry, and I hope this helps some.
Mags

[teo]

Hi Mags,

Thanks for the inputs and explanation. Appreciate that.

About your question, does it run 9-10 or 7-8? I dont understand what number is this, sorry ? Maybe you can tell me more. Thanks

I guess my mom has rheumatoid arthritis but very mild one as she hardly complains. Her wrist bone and toe are a bit deformed, we showed it to the hema, the hema says it is fine. We thought it was because of some vitamins deficiency.

She has an operation to remove bone spurs on the spinal cord few years back. During that time, seems she has anemia already based on the CBC results before the operation. After the operation, the doctor gave her some medicines to improve her blood conditions.

I dont think she has chronic renal failure as per her CBC report doesnt showed that symptoms i guess

If the sample collected is not optimal, meaning they can't get good sample, so the results is not accurate i presumed. Correct me if i am wrong.

From my mom reports, she does not have the Bone Marrow Aspiration as there is no fragment for interpretation, just wondering how serious is this ? If anyone know, please do comment. Thanks.

For the last 2 times of the BMB, both without Bone Marrow Aspiration results as Inadequate sample for interpretation.


Actually i have started talking to the doctor in Singapore for further consultation. The hema actually recommending to redo the test again with the following recommendation. Just wondering is it necessary to do the FISH, pnh screen test ?

bone marrow aspirate, trephine biopsy, flow cytometry, cytogenetics, mds fish, pnh screen, FBC, renal, liver, serum copper, immunoglobulins and serum electrophoresis. B12, folate ferritin

cheers
teo

[Mseth]

Hi Teo,

I am sorry your mother has to have many BM tests, she is very brave.

In India, we also have similiar problem of no MDS specialists.

I am still far from being able to understand all the terminology related to MDS, but I do know that no blasts is good, and that hypocellular marrow (having lesser than normal cells) means that drugs like Cyclosporine may have positive result.
I recently read information on 'Aplastic Anemia', AA patients also have hypocellular marrow and many respond to a male hormone steroid - Danazol, which seems to have fewer side effects than the drugs for MDS. Danazol causes an increase in Hemoglobin, though it is not prescribed routinely. My mother has hypercellular (more cells) marrow, and Danazol is on my list of questions to ask her doctor in the next appointment.
The FISH and cytogenetic tests will give information is there is any chromosomal abnormality like del 5q, trisomy 8, del 20q etc. If del 5q is seen, it can be treated with Lenalidomide with good response.
Hope the EPO is continuing to work for your mother, this dose can be increased also as it is very low dose.
Hope your consultation with Doctor in Singapore goes well and you get the answers you are looking for.

[maggiemag]

Teo: I was asking about the Hb results. You have 2 different headings for the CBC results. Her Hb runs lower in one and higher in the other: Kluang or JB. Are these before and after a transfusion?
She doesn't have any sign of renal failure in her labs, with a creatinine very normal and urea normal.
Her arthritis sound more like osteoarthritis than rheumatoid. Osteo is very common with aging, and RA is more serious and can have systemic effects as well as localized joint issues.
I would go along with the doctor who recommends repeat. And yes, agree that a FISH is desirable. And cytogenetics can change, so I think they always check those. Maybe next time they will get an optimal sample! A sub-optimal though is better than none I would think.
Mags

[teo]

Hi Mags,

Kluang and JB are towns in Johor State, Malaysia. Kluang has smaller hospital compared to JB. My mom stayed in Kluang, so she followed up with the normal doctor here for normal CBC test and BT. She always has the BT 1 week before meeting with the hema in JB. While JB is a central/state goverment hospital with hema and other specialists. So the BMB, if needed. EPO, and other medications are done/get from here. . The distance between these 2 places are about 1.5 to 2 hours drive.

The hema in singapore is from the mds-centeres-of-excellence, so hoping he will find out what's wrong with my mom.

cheers
teo

[teo]

Hi Mseth,

Actually if possible, she doesnt want to have any BMB anymore. She always feel scared and worried when the hema told her that they want to do the BMB after 6 months.

My family have come to a decision that we might not want to go for further BMB by the goverment hospital anymore besides the one recommended by the singapore mds-centeres-of-excellence will be the last one.

I guess some patients have more BMB's than my mother within almost 2 years. I heard it is kind of "make sure" the disease will not turned into something bad. That's what the hema told my sister.

From the latest reports, no blast, No chromosomal abnormality observed but i dont know about others as the report is not very cleared on some of the pages. i am still worried about other results on the report to be honest.

Example :
If you looked at the attachment, there were something about CD20 and CD3 shows positively and etc. i dont know whether this is good or not.

Another question i have for so long is whether my mother is MDS or not. The hema always say "Maybe", i guess maybe the results from the BMB is not good for interpretation, so they are not sure either.

Actually my mom tried Cyclosporine before, no response.

About Danazol, i asked that before to the hema but he just told me not to believe too much in what i saw in the web. But when i told the hema that i joined the Marrowforums in US, then he kept quiet. Another thing is the goverment hospital try not to give the expensive medicine to the old people unless it is REALLY REALLY necessary.

I know the EPO is not enough for my mom, but it is better than nothing as the hema in the first place doesnt even want to give it to my mom.

cheers
teo

[Mseth]

Hi Teo, the bone marrow test is definitely a 'make sure' I hope the Singapore doctor is able to give a sure diagnosis.
My mother did not respond to 40,000 weekly dose of epo, she will now try 60,000 and also with addition of Gcsf. I was able to insist after reading all the information provided by some senior members at this forum. We do not have access to government facility in India, so we must do everything in private hospital. As I understand, epo is safe and is first line of treatment for anemia in bone marrow disorders. Followed by addition of Gcsf to further stimulate the bone marrow to make red blood cells.
Doctor here also not keen to try danazol, but if nothing else works in the next few months, I will try again as danazol has fewer side effects than other mds drugs.
I have one question for you, is your mother taking 6 tablets of chelation drug everyday? Is she tolerating that well, any side effects?

[teo]

Hi Mseth,

I hope the EPO + G-csf works for your mom. If i remember correctly, good to have the EPO test first as if the serum-EPO is more than 500, then it is less effective for EPO.

She is doing fine with 6 tables/day now. If you are worry, you can try with 3 tables a day first and slowly increase it to 4, 5 and 6 in a few months time. Just a thought. Actually we are worried as well, this is what we do for my mother. Increase slowly the tablets/day. No side effects from the beginning.

I think there were 3 iron chelation, this is the info i found last year - deferoxamine (Desferal), deferiprone (Ferriprox) and deferasirox (Exjade). The least side effect one is Exjade based on the info i get from the web. We asked the hospital to prescribe Exjade but the hema says it is very expensive compare to Ferriprox, so my mom only getting Ferriprox.

cheers
teo

[Birgitta-A]

Hi Teo,
You know Ferriprox was approved in the US very late because low WBC is not an uncommon adverse effect. Look out for neutropenia! I could not tolerate Ferriprox.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for the tips and info. Actually my mom last month CBC showed his WBC is on the lower border of the range. I will keep monitoring my mom's WBC.

cheers
teo

[Mseth]

Hi Teo,

Hope you mother is doing fine. Have not seen any post from you for a while now.
Just wanted to check with you if her ferritin is being monitored after start of chelation and if there is good reduction with ferriprox.

Thanks.

[teo]

Hi Mseth,

Glad to hear from you. Hope your mother is doing well with the EPO+G-csf. How is your mom Ferritin now ?

Actually i still read the posting in the forum. About my mom, i dont have much info to share as of now. Basically she has 2 BT/month and followup every 2 months with the hema in the goverment hopsital.

I have my mom arranged to meet another hema after Chinese New Year, to get more advice.

Thanks for asking about my mom ferritin level. Actually we did the test in a private blood test center, the ferritin level is still high, 3758 (Nov 2013) but consider improving as compared to the results from January 2013 (ferritin level 4318). Not too significant but consider okie i presumed.

Actually recently she just changed her medication from EPO to Danazol as the hema says the EPO is not working for her but i still doubt it was because of the dosage prescribe.

From recent blood test (Nov 2013), her WBC was first time out of range, 3.74 (Normal range 4-11). I am not sure whether it was Danazol causing the WBC to drop or not. If anyone in the forum have an idea why suddenly the WBC drop, please do share with me. Thanks.

[Mseth]

Originally Posted by Birgitta-A

Hi Teo,
You know Ferriprox was approved in the US very late because low WBC is not an uncommon adverse effect. Look out for neutropenia! I could not tolerate Ferriprox.
Kind regards
Birgitta-A

Hi Teo,

Good to hear from you. On the low WBC count, just re-quoting from an earlier post that Ferriprox is known to cause low WBC as a side effect. But your mothers WBC is only slightly lower so maybe some other temporary reason, which could correct by itself. But still good to keep a watch.
My mother has also just recently started with low dose chelation drug asunra(same as exjade).
Doc has discontinued the epo+gcsf for now, he does not see any major benefit, so its only RBC transfusion for now.
All the best!!

[teo]

Hi Mseth,

Sorry to hear that the EPO+gcsf doesnt work for your mom. Is the hema plan to try Danazol instead ? How is your mom Ferritin level now ?

As my mom has been on Ferriprox for 11 months, so i am not sure is it really Ferriprox bring down the WBC. I remembered asking Birgitta-A about Ferriprox in one of the post long time ago. Will try to find it.

I just thinking about Danazol as she had it last month and the WBC came down after that.

Anyway i will keep an eye on her WBC.

[teo]

Hi Birgitta-A,

Good morning! Hope you are doing fine! Early Merry Xmas to you .

I found your post answering my question on Exjade and Ferriprox. From the info, Exjada can give low WBC but it is not common and Ferriprox leads to low WBC more often.

As you mentioned in the post.
"When my WBC started to decrease Ferriprox was stopped and I continued with Desferal in connection with txs. When my WBC was OK - at that time I did take 2 Neupogen injections/week - I started with a very low dose of Exjade and could never take as much as I should according to my weight due to decreasing WBC."

Just wondering how much lower the WBC decrease for your case before and after consumed Ferriprox ? Is the WBC decrease for over a period of few months or longer ? or you just keep consuming the ferriprox and monitoring the WBC till certain level, then you stopped the Ferriprox ? Thanks in advance for the help.

[Mseth]

Hi Teo,

I had asked the doctor about Danazol a few months back, he said it was not the treatment for MDS, moreover it could cause some liver problems. But I still think that it will be less harmful than other approved MDS drugs, so I plan to ask him about it again.
My mothers ferritin showed 2600 at one lab and 3600 at another. The lab showing 3600 is more reliable so I believe that number. She has started on low dose chelation for now with Asunra(exjade equivalent).
Has your doctor considered Lenalidomide? It is for MDS and I think your mother does not have a confirmed diagnosis yet.

Hope Danazol brings about some good effect in your mothers case. Do keep us informed.

All the Best!!

[Birgitta-A]

Hi Teo,
I took Ferriprox 500mg x 3 2009-03-17 to 2009-06-01 when the dose was increased to 1000 mg x 3. My neutrophils decreased from 3.1 to 1.0 2009-06-23. I had to take Neupogen injections every day until 2009-07-09 when my neutrophils were 2.9. My counts were controlled every week.

Sept 2009 I started to take Exjade.

I feel fine thank you. I started to take Revlimid 5 mg during 21 of 28 days 2013-07-18. 2013-09-16 the dose was increased to 5 mg/day. I still needed txs every third week so 2013-10-15 the dose was increased to 10 mg 21 of 28 days. Now I haven't needed any txs since 2013-11-21 and my HGB is 110.

Merry Christmas to you too !
Kind regards
Birgitta-A

[Mseth]

Hi Birgitt-A,

Great to know that Revlimid has worked so well for you!!

Wish you a merry Xmas!!

[teo]

Originally Posted by Birgitta-A

Hi Teo,
I took Ferriprox 500mg x 3 2009-03-17 to 2009-06-01 when the dose was increased to 1000 mg x 3. My neutrophils decreased from 3.1 to 1.0 2009-06-23. I had to take Neupogen injections every day until 2009-07-09 when my neutrophils were 2.9. My counts were controlled every week.

Sept 2009 I started to take Exjade.

I feel fine thank you. I started to take Revlimid 5 mg during 21 of 28 days 2013-07-18. 2013-09-16 the dose was increased to 5 mg/day. I still needed txs every third week so 2013-10-15 the dose was increased to 10 mg 21 of 28 days. Now I haven't needed any txs since 2013-11-21 and my HGB is 110.

Merry Christmas to you too !
Kind regards
Birgitta-A

Thanks for the info Birgitta-A. Good to hear that Revlimid work well for you.

[teo]

Originally Posted by Mseth

Hi Teo,

I had asked the doctor about Danazol a few months back, he said it was not the treatment for MDS, moreover it could cause some liver problems. But I still think that it will be less harmful than other approved MDS drugs, so I plan to ask him about it again.
My mothers ferritin showed 2600 at one lab and 3600 at another. The lab showing 3600 is more reliable so I believe that number. She has started on low dose chelation for now with Asunra(exjade equivalent).
Has your doctor considered Lenalidomide? It is for MDS and I think your mother does not have a confirmed diagnosis yet.

Hope Danazol brings about some good effect in your mothers case. Do keep us informed.

All the Best!!

Actually the ferritin results is always fluctuating for my mom too. I mean same blood taken but initial and final results always different. Hope exjade works well for your mom.

My mom put on weight when she has EPO (first few months, around 2kg, then stabilize) and now on Danazol (so far almost 2.5kg within 2 months, hopefully will stabilize soon). This is one of the side effect of having these 2 medications. She always complained that she cant wear her clothes

One question, how much the costs is for 500mg Exjade in India ? I asked my niece to check in US, according to her, it costs US700+ for 30 tablets. Very expensive.