Confused with Bone marrow report

[teo]

Hi All,

Just to share some good news, my mom went to the goverment hospital (state hospital) last week and the hematologist actually did all kind of test including EPO and others like ALT, ALP, albumin, chloride, Sodium, Potasium and many more. I will attached all the test reports here once i have them as normally it takes few weeks for the hospital to come back with the results. The BMB is arrange on 7th Nov.

According to the hematologist, they will try the treatment options accordingly if my mom is diagnose with MDS or AA.

The hematologist actually mentioned about using cyclosporine again with higher dosage (maybe 100mg/day), EPO + growth hormones and other treatment options which make us see the hope that they know how to treat my mom's.

Creatinine tested okie at 0.054. According to my sister, this value is within the ref range.

Many thanks to you again Hopeful , as you told me that maybe cyclosporine is too low for my mom and we brought this up to the hematologist and he agreed that the dosage is definitely too low.

[Birgitta-A]

Hi Teo,
Really very positive that your mother will be examined so you will know what disease she has. Hopefully they will find effective treatment.
Kind regards
Birgitta-A

[teo]

Thanks Birgitta-A .

Actually one thing puzzle me about my mom's ferritin, the blood was taken at the same time but the results from 2 labs showing significant different results. One from the specialist hospital was 4877ug/L and the other was sent to outside pathology, the ferritin was 3082ug/L.

I saw some threads mentioning about the difference in the results might be caused by person that handling the test but based on my mom's results (blood taken same time), it showed too significant results.

FYI. According to the HB tests as below, comment from the hematologist is my mom's has no evident of thalassaemia, nor of any haemoglobinopathy.

Test results (HB electrophoresis) :
Ferritin : 3092ug/L
Haemoglobin A2 : 2.7% (1.5 -4.0)
Haemoglobin F : 0.4% (< 1.6)

Serum Folate : 53.4 nmol/L (> 5.7)
Serum Vit-B12 : 731pmol/L (>185)

My mom's has detailed blood test again in the state hospital last week, we will check how is the outcome from them soon.

[Birgitta-A]

Hi Teo,
Different labs can have different methods and different results but these results are really very far from each other.

Your mother has very high folat and B12 values - as you understand she shouldn't have any of these vitamins now.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

According to the hematologist (not so good hematologist) saying everything are fine. for us, it looks fine as well, as the results were higher than reference range.

Just wondering why you said that the Folate and Vit-B12 are very high ? I know the number look high compare to the reference values. Do you have the reference range for Folate and Vit-B12, i mean low side and high side ? Thanks.

Serum Folate : 53.4 nmol/L (> 5.7)
Serum Vit-B12 : 731pmol/L (>185)

[teo]

Hi Birgitta-A,

FYI. I found some info from the below web site for both of the reference range but again it might be different for different lab.

http://www.australianprescriber.com/magazine/22/1/16/8

Serum vitamin B12 ---> The most widely used test for B12 deficiency is the serum B12assay (reference range 150-600 pmol/L).

Serum folate ---> The usual first test for folate deficiency is assay of serum folate (reference range 7-40 nmol/L*).

* Reference ranges for serum folate, red cell folate and serum vitamin B12 are specific to the methodology used by individual laboratories and may not be identical to the
ranges given in the text.

My sister consulted a doctor, according to the doctor, both of the results showing a little bit high reading, stopped the Vit-B12 and Folate for few weeks and monitor.

[Birgitta-A]

Hi Teo,
Good to stop both B12 and folic acid and control after some weeks. I have not read anything about B12 being toxic but folic acid is DNA methylating. You know Vidaza and Dacogen are DNA hypomethylating drugs - they take away methyl groups from DNA.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thank you so much for pointing out about Vit-B2 and Folate reading and the side effect on excess Folic Acid. Appreciate that.

I guess the hematologist that treated my mom's before is really very lousy and unethical. How can he just saying everything are fine if there were something wrong on some of the test results.

[Marlene]

Teo,

If she is taking B12 and folate supplements, then her blood serum reading would be higher. To get a better understanding of her B12 and folate, it's best to stop all supplements at least four days prior to testing. The low end of B12 reference range your lab is using is actually too low and anything under 400 should be further investigated. Blood serum B12 is the least accurate way to assess b12 status.

I also want to point out that not everyone can convert some forms of B12 and folate supplements so that the body can use them. If they cannot convert them, they tend to stay in the blood.

[teo]

Hi Marlene,

Yeah my mom's consumed vit-B complex, vitamin C and folate everyday since the day she was diagnosed with MDS. As pointed out by Birgitta-A and consulted the doctor, my mom stopped the vitamins now.

Thanx for the good tips about prior testing the vitamins. The hematologist never mentioned about this ).

About your statement "I also want to point out that not everyone can convert some forms of B12 and folate supplements so that the body can use them. If they cannot convert them, they tend to stay in the blood."

Is that mean if the person body can not convert all the vitamins consumed, then the blood tests for the vitamins (Vit-12 and Folate) will always be on the high side ???

[Marlene]

Not always especially if it's not being absorbed. B12 serum testing does not rule out a B12 deficiency. If it's in the low - mid normal range and there are hematological or neurological symptoms, further testing should be explored. So if you knew your mom's B12 prior to her supplementing it, that would be helpful.

This link provides a pretty good understanding of B12. The second is an update to it.

http://www.aafp.org/afp/2003/0301/p979.html

http://www.aafp.org/afp/2011/0615/p1425.html

The more bio-available form of B12 is methyl-cobalamin and for folate, L-methylfolate, Metafolin (or any bio-active folate).

[teo]

Thanks for the links Marlene.

FYI, my mom's get her Vit-B complex, Vitamin C and Folate from the goverment hospital. I dont know whether it was bio-available form or not. Will check with the doctor.

As the serum Vit-B12 and Folate are tested after she was diagnosed with MDS, there were no past records for it.

[teo]

Hi all,

I have a question about whether sick (fever and coughing) will cause the HB to go low.

Another question is, is it okie to have the BT when my mom is not feeling well (fever and coughing) ?

Thanks in advance for the help.

[teo]

Just to update my mom status. The BMB was postpone again today for another week as my mom doesnt feel good. She has fever and coughing, the hema saw my mom has difficulty of breathing when she is coughing, so the hema sent my mom for oxygen treatment for awhile.

The ferritin level was at 5186 from the blood taken 2 weeks ago. It seems to me my mom ferritin is fluctuate significantly within 20 days (from 3082 to 5186). Anyway the doctor prescribe the chelation therapy, Ferriprox of 1500mg/day as starting (should have 3000mg/day based on current ferritin level). According to the hema, the possibly side effect might be vomiting for about a month or two for some people.

Actually i read some of the threads for Iron overload and chelation therapy and found out that quite a few things need to be monitor as below. Plus i have some questions about the chelation therapy.

Monitor
1) HB and Cells count --- If HB and cells count going low after taking Ferriprox, should my mom go for BT and continue with the ferriprox or stopped the ferriprox totally ?
2) Visual and hearing
3) Check Creatinine (Kidney) and Albumin (Liver)

About the chelation therapy options, from the threads, most of the people choose Exjade, Is it because the ferriprox is not approved by FDA few years back or is it really the side effect is worst than Exjade ? If anyone has the info about this, much appreciated if you can share with me.

I remember reading the threads that the Chelation therapy should not go with vitamin C, when we brought this up to the hema, he does not know but he wants my mom to take the vitamin C after 2 hours consuming the ferriprox. Any thoughts is welcome. Thanks.

[teo]

Hi Birgitta-A,

FYI, my mom actually has vitamin B complex, Folate and Vit C from the goverment hospital.

my sister showed the Vit-B12 and Folate test reports to the hema and informed the hema that we stopped the Folate and B complex at the moment as it is a bit high now but the hema doesnt agreed, He wants my mom to continue taking the Folate and the B complex. According to the hema, B complex does not contain B-12 but i search the web, it has vit B-12, Folic acid.

Just wondering what do you reckon about the hema suggestion ? continue with the B complex and Folate or stopped for awhile and check the Vit B-12 and Folic acid level again before continue again. I need some thoughts on this. Thanks.

[Birgitta-A]

Hi Teo,
I will try to answer your questions:
1 All infections can decrease all counts.
2 I have never heard that it isn't OK to get BT if you have an infection.
3 Ferriprox was during many years not approved in the US because it can decrease WBC - I tried that drug and got very low WBC. I think more patients tolerate Exjade (that can decrease WBC too).
4 All the tests you have listed should be controlled - ALAT and ASAT are the best liver tests.
5 About Vitamin C: When I started iron chelation (with Desferal) I should start to take Vitamin C after one month not initially.
6 The question of B12 and folate is not so important - your mother can take the vitamins.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Many thanks for the answer and tips about vitamin C and liver tests. Appreciate that.

http://forums.marrowforums.org/archi...hp?t-2192.html ----> High liver count threads.

I recheck my mom blood test results and noticed that there is ALT.

My mom ALT is 41 on 23/10/2012 and 76 on 7/11/2012. The ref range is 0-40. LDH is high at 320 on 7/11/2012. The ref range is 135-225. I read in the web that the LDH high can caused by many factors, same for ALT. The best way is keep monitoring the pattern. If you have better understanding, Hope you can share with me. Thanks.

http://labtestsonline.org/understand...s/ldh/tab/test --- LDH links
http://labtestsonline.org/understand...s/alt/tab/test --- ALT links

I have further question about the ferriprox and Exjade, hope you can shed some light on this. Thanks in advance.

About Ferriprox and Exjade, since both reduce WBC, Just wondering why you choose Exjade ? Is it because Ferriprox bring down the WBC quicker than Exjade or any other specific reasons.

When you tried Ferriprox and WBC go low, did you go for BT and continue with Ferriprox or you just switch to EXjade directly when you found out the WBC is low ?

FYI. According to the goverment hospital, as Exjade is very expensive, they dont provide that medicine. I would like to be ready if Ferriprox brings down the WBC too much compare to Exjade, then i will try to get the Exjade ready at home first as if we order from the pharmacy, it will takes pretty long time.

[Birgitta-A]

Hi Teo,
Your mother's ALT is not very high - I should not worry about that. It is probably an effect of one of her drugs. LDH is high in many cancer diseases and we can't do much about that.

Ferriprox leads to low WBC more often. The most important WBC are the neutrophils. Low neutrophil count is called neutropenia.
http://www.accessdata.fda.gov/drugsa.../021825lbl.pdf

Exjade can give low WBC but it is not common. Exjade has other adverse effects but as far as I understand they are not so dangerous as neutropenia.
http://www.us.exjade.com/health-care...g-patients.jsp

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.
Kind regards
Birgitta-A

[teo]

Hi Birgitta-A,

Thanks for the prompt reply. You really help me on this as my mom will start her Ferriprox tomorrow. My sister needs to consult the hema tomorrow what we should do if the WBC go down and outside the ref range.

I have further question about the WBC going low for ferriprox on your case. Hope it is fine.

1) Before you start the WBC, what is your WBC level ? If you still remember.

2) After how long you consumed the ferriprox, the WBC go down ? I am asking because i need to get the test done in private pathology if the goverment hospital did not follow up on this.

3) Just wondering is your WBC go down to outside the ref range (x10^3/uL [4 - 11]) or just started to go down but within ref range, then you stopped the ferriprox ?

4) About Desferal and Exjade, just wondering why you choose Desferal in connection with BT instead of taking the Exjade to replace the Ferriprox ? Just curious.

Attached please find my mom WBC and other counts related to WBC. If you know anything about those counts, you are utmost welcome to comment. Thanks again Birgitta-A.

[teo]

Hi all,

I have a question regarding ferriprox, as i read the below link, it stated that if the patient have one of the symptoms, we need to consult the hema but at the moment, the hema is off because it is sunday, just wondering anyone have any experience before, consuming Ferriprox while you are having fever and flu. Thanks.

http://www.drugs.com/sfx/ferriprox-side-effects.html

My mom have flu and fever before consuming the ferriprox. Now she is taking 1500mg/day. I am worry about the info i found from the web. Should my mom stop taking the ferriprox till she is recovered from the flu and fever ?

Capture part of the side effect mentioned on the link

"Serious and sometimes fatal infections may occur during treatment with deferiprone. Stop using this medicine and call your doctor right away if you have signs of infection such as: fever, chills, body aches, flu symptoms, or sores in your mouth and throat."

Have a good weekend.

[Marlene]

John always stopped until thing cleared up. Sometimes, he would get huge bruises when he was doing his therapy sub-q. He would suspend treatment until things cleared.

[Birgitta-A]

Hi Teo,
I was taking Neupogen often 2 inj/week after Neutropenic fever Sept 2007 until Nov 2011.

My WBC were 5.5 when I started to take Ferriprox 1500 mg/day March 2009. My WBC started to decrease after one month and was 1.7 after 3 months. Then Ferriprox was stopped and I took Neupogen every day during 9 days. Then my WBC was 4.4.

You know Desferal has been used for iron chelating during about 50 years. In Sweden it is the first drug and I got Desferal in connection with every tx from Aug 2007 until I could stop txs Sept 2010.

I started to take a low dose of Exjade (250 mg/day) Sept 2009.

Your mother's WBC count looks OK for the moment.

As far as I understand it is much more important to prevent infections and bleedings (common fatal complications in MDS) than to treat iron overload. I don't know if your mother should take Ferriprox when she had flu with fever.
Kind regards
Birgitta-A

[teo]

Thanks Marlene for the advice.

Many thanks Birgitta-A for answering all my questions. Appreciate that. There were good guidelines for me to follow at least based on your past records on consuming the Ferriprox.

I got the info from my sister that she asked the hema, the hema says it is okie to take ferriprox even my mom has fever and flu.

[teo]

Hi Birgitta-A,

I have another question about ferriprox. Do you have BT when you consumed ferriprox ? If you have BT, just wondering how long before you need a BT ?

I am asking because my mom will have BT every month, so this might help her to maintain the WBC but i am not very sure as we dont know how fast the ferriprox can bring down the WBC.

[Birgitta-A]

Hi Teo,
Every chelating drug I have been treated with (Desferal, Ferriprox and Exjade) has increased the interval between txs from 4 to 6 weeks during a few months eventually due to less oxidative stress in the bone marrow in connection with lower ferritin level.

I don't understand how a tx could help your mother to maintain her WBC.
Kind regards
Birgitta-A