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MDS Myelodysplastic syndromes

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  #1  
Old Thu Oct 4, 2012, 04:51 AM
teo teo is offline
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Confused with Bone marrow report

MY mum was diagnosed with MDS early of this year. She went for Bone Marrow test, according to the doctor, she has refractory anemia. The doctor treated her with cyclosporine but there is no improvement on the RBC after few months taking the medication. During the medication, my mom was having the blood transfusion, 2 pack/month as her RBC is getting low after 3 to 4 weeks later. Finally the doctor just tell us that the only option is blood transfusion for the rest of her life.

After reading the marrow forum, i learned a lot and started asking questions. Just yesterday during my mom followed up, the doctor says we have few options now. I cant believe my ears when i heard from my sister as she accompanied my mom.

These are the options from the doctor. As i read the forum, i dont know which one is good for my mom based on her bone marrow report, if the expert in the forum can shed some light, it will definitely helps me a lot.

1) Erythroprotein
2) Vidaza
3) Dacogen

About Erythprotein, according to the internet, Erythropoietin is particularly helpful if the serum EPO level is below 200 IU. Do you think it is worthwhile trying in order to bring up the RBC ?

I need some advice as well on the bone marrow report as i dont understand all of them plus the doctor just tell us everything looks ok on the bone marrow report. The only problem is the bone marrow cant reproduce enough RBC.

Below is my mom bone marrow report

Bone Marrow Cytogenetic Report Bone Marrow Aspiration
Bone marrow aspiration taken from right PSIS
Specimen : Bone Marrow No fragents obtained
Collection Date : 10/01/12 Smear was hypocellular with occasional myelocyte, neutrophil and normoblast seen
Clinical Diagnosis : Myelodysplastic Syndrome No blast noted
Comment : Very few cells and No Mitosis were obtained from this specimen Iron stores were not assessable
Date report : 16/1/2012
Bone Marrow Trephine

Trephine biopsy consisted of fragmented marrow with blood clots
Bony trabeculae appeared thin
Intertrabecular spares were 10% cellular with increased fat spaces
Occasional megakaryocytes seen

Interpretation
Bone Marrow Aspiration
Hypocellular marrow
Await Trephine

Bone Marrow Trephine
Hypoplastic Anaemia

I also attached my mom CBC results for the past few months. When the HB is high meaning she just had blood transfusion few days before.

Thank you very much for the help in advance.
Attached Images
File Type: jpg Blood tests report.jpg (66.0 KB, 72 views)

Last edited by teo : Mon Oct 15, 2012 at 10:46 PM.
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  #2  
Old Thu Oct 4, 2012, 05:04 AM
teo teo is offline
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Iron overload after blood transfusion

Follow with my previous question, i would like to add one addition question about the iron overload problem that my mom currently having. From the serum ferritin tests, she has very very high iron overload as i looked at the number 4877. Based on the ref range, it should be max 300 i guess as i dont have the report with me now. The funny thing is according to the doctor, normal people can have as high as 1500.

Can expert in the forum kindly advice me whether is this level of iron consider very critical stage or not as the doctor seems take it quite easily. The doctor just tell my sister to inform the goverment hospital that my mom has iron overload problem after blood transfusion of around 18 packs as my mom is getting the blood transfusion in the goverment hospital.

FYI, in Malaysia, we have goverment hospital and private hospital, or called specialist hospital.

All the tests was done with the private hospital. The only thing which was done in goverment hospital is blood transfusion.
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  #3  
Old Thu Oct 4, 2012, 06:42 AM
Birgitta-A Birgitta-A is offline
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EPO drugs

Hi teo,
It is true that EPO drugs have less effect if our serum-EPO already is high but they can be effective if the serum-EPO is less than 500. EPO drugs should be combined with Neupogen or a similar drug for better effect: http://www.ncbi.nlm.nih.gov/pubmed/12648074

Du you know how high your mother's serum EPO was initially?

As far as I understand your mother has low risk MDS. Her WBC are OK and her platelets are excellent. Then many doctors recommend watch and wait. If your mother will respond to EPO + Neupogen or a similar drug she will perhaps be transfusion independent.

The high ferritin level after only 18 unit is really quite high - your mother probably had a high ferritin level before transfusions due to hemolysis (the red blood cells burst too early). It takes years to develope toxic effects from iron overload but since your mother hopefully will have many years before her she could start iron chelation now.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, transfusion dependent from dx with HGB 7.0. Serum EPO more than 800 at dx so I never received EPO drugs. Only supportive treatment with txs, Neupogen and iron chelating drugs until 2010. Since then Thalidomide + Prednisone with positive results.
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  #4  
Old Thu Oct 4, 2012, 08:04 AM
Marlene Marlene is offline
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I agree that the iron is quite high just after 18 transfusions. You may want to check to see if she has hemochromatosis (hereditary iron overload type). They can test for this. Do you know if she had her iron checked before she started transfusions? That would be good to know. High iron can impact the bone marrow. A FE of 1500 in anyone needs to be explored so I'm not sure what your doctor meant by his statement. FE readings can and do bounce around especially if there's any inflammation or infections. So it's good to have it tested a few times to see what the trend is over time.

Typically, they check iron levels, B12, folate, copper, zinc and vitamin D levels. See if you find out that information.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Thu Oct 4, 2012, 10:38 AM
Hopeful Hopeful is offline
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Why MDS?

Hi Teo,

How old is your mom? How long did she take cyclosporine? Why do her doctors give her an MDS diagnosis? I didn't see any reason for this diagnosis based on the BMB report that you attached. Were her cytogenetics normal?

Did she have an illness in June that resulted in her lower counts and possibly caused you to question whether the cyclosporine was helping/hurting? How frequently is she getting RBC transfusions now and what is her HGB level before she gets them?
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Thu Oct 4, 2012, 12:40 PM
teo teo is offline
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Mom's diagnosed with MDS

Hi Birgitta-A, Marlene and Hopeful.

Thanx for the advice. You can find your answer in this message.

Actually the reports attached is what the doctor did for my mom. Nothing else.

I have send my sister with more questions after reading from internet and the forum, just to clarify why the doctor did not test the vitamin deficiency first, EPO checked and etc or other options that might be possible to make my mom transfusion independent, actually this makes the doctor angry which he told my sister that if we dont trust him, then better for us to ask another doctor for advice.

After asking by my sister, the doctor doing the Serum folate and vitamin deficiency tests today which makes me angry and helpless as we have to rely on this doctor as he is one of the best, i heard from another doctor.

I am so helpless now as I thought i dont need to tell the doctor what to do and how to treat MDS but for my case, seems like i have to ask the doctor to do this and that and this make him angry.

History about how my mom found out she has MDS.

My mom complaints about tired, heartbeat is pumping faster and she heard sounds from the brain like water going through the pipe without enough fluid, so we brought her to see a doctor, then the doctor found that her eyes cornea and hands are "white" and face are pale.

After the CBC check, the doctor see the HB going as low as 7 as the rest of the test result are okie, he suggested that my mom should go for blood transfusion first while try with the medication he proposed as mentioned before. I think HB and RBC are related as when HB goes low, the RBC is going low as well for my mom case.

About the iron overload, actually the bone marrow report mentioned that "Iron stores were not assessable" which i dont understand. Can we check iron from the bone marrow ?

After calling the doctor again today to ask about the iron overload, the doctor finally propose to use the chelating. As he proposed 3 type of chelating. deferoxamine, deferiprone or deferasirox. The doctor that treat my mom now suggesting us to go for deferiprone but i have consulted another doctor, he proposed deferasirox as it was widely use in the world. I hope someone can shed some light on this. Thanx.

Actually i have consulted another doctor about my mom iron current level 4877, according to him it is still fine but a bit high. Medication is definitely needed but dont worry as it would not affect the heart or liver instantly at this level. it might takes 10 or 20 years to affect the heart or liver if the level can be maintain around 1000-2000.

Marlene, what is FE stands for. Sorry i am new to all these.

Birgitta-A, seems your case is quite similar to my mom as her HB is around 7 as well. Just wondering after you had Thalidomide + Prednisone with positive results. are you still on blood transfusion ? Just curious as you are stating that "Only supportive treatment with txs, Neupogen and iron chelating drugs until 2010". Sorry if i understand wrongly.

Hopeful, my mom is 71 now. the cyclosporine went on for around 3 to 6 months but showed no improvement on the HB. So the doctor stopped it and telling us that the only option is blood transfusion but now as mentioned in my previous message that after many Q&A, even the doctor gets angry but seems like he proposed some other options.

About cytogenetics results, i dont understand the bone marrow and cytogenetics report. so i really cant answer you this question, sorry. My sister asked the doctor about the report, the doctor just say my mom has MDS (refractory aneamia) and it was not aplastic or hypoplastic anaemia but i saw the wording of hypoplastic aneamia in the Bone marrow Trephine.

If someone can explain my mom bone marrow report to me, that would be very helpful. The report was attached on my intial message.

2 packs/month of RBC transfusion are needed.

The last CBC checked was done few years back and the HB is abit low but my mom did not complaints at all. Only beginning of this year, she starts complaining.

Last edited by teo : Wed Oct 31, 2012 at 10:26 PM.
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  #7  
Old Thu Oct 4, 2012, 12:48 PM
teo teo is offline
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I have addition questions. As my mom has low risk MDS at the moment, should she try Vidaza or Dacogen at this stage ? According to the doctor, he doesnt encourage that based on her age. Any comments is utmost welcome.
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  #8  
Old Thu Oct 4, 2012, 01:09 PM
Marlene Marlene is offline
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Sorry, FE is serum ferritin. It is a protein in the blood which binds to iron. Usually, iron is stored in the liver, spleen and bone marrow. When the serum Fe is high, it is usually an indication that the iron stored in your body is high. When the iron is bound to this protein, the iron is considered to be safe. But unfortunately, it also means that you have too much stored in the organs and is then deposited into other organs like the pancreas or pituitary.

Unless they checked her FE and did a iron panel on her before she started the transfusions, then they cannot really attribute her high FE level to her transfusions and should investigate further to rule out other problems.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Thu Oct 4, 2012, 03:21 PM
triumphe64 triumphe64 is offline
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There is a lot in these messages to digest. I have Pure Red Cell Aplasia. It is quite rare. It affects only my red cells and Hg. The Reticulocytes, immature red cells, fail to form. It took me three BMBs before the pathologists determined that is what I have.

Since your mother seems to be ok with her white cells and platelets, the doctors might consider that as a possible diagnosis.
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #10  
Old Thu Oct 4, 2012, 07:20 PM
Chirley Chirley is offline
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Hi, I just want to give you some moral support for your issue with the doctors anger.

I am dealing with the same problem with my mothers doctor. I have decided that I will ask any question I need to ask, I will demand answers and if I don't like something (for instance a certain medication), I will tell him. If he gets angry....then that's his problem.

You need to do what feels right for your mothers care and what your mother is happy for you to do. The doctors feelings, ego and emotions are not your problem, they are his problem. Please don't let him intimidate you into silence.

If you can start having friendly communication that is very good but if he still becomes defensive or angry, ignore his attitude and do whatever is best for all of you.

Being an advocate for someone you love is a long, hard, tiring process but you will see the benefits of being persistent.

Regards

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion

Last edited by Chirley : Thu Oct 4, 2012 at 07:28 PM. Reason: Darned iPad touch screen
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  #11  
Old Thu Oct 4, 2012, 09:05 PM
teo teo is offline
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Ferritin

Quote:
Originally Posted by Marlene View Post
Sorry, FE is serum ferritin. It is a protein in the blood which binds to iron. Usually, iron is stored in the liver, spleen and bone marrow. When the serum Fe is high, it is usually an indication that the iron stored in your body is high. When the iron is bound to this protein, the iron is considered to be safe. But unfortunately, it also means that you have too much stored in the organs and is then deposited into other organs like the pancreas or pituitary.

Unless they checked her FE and did a iron panel on her before she started the transfusions, then they cannot really attribute her high FE level to her transfusions and should investigate further to rule out other problems.
Hi Marlene, Thanx for the explanation. Appreciate that. The doctor has to bring down the iron level on my mom as this is what concern us now even the doctor says there is no worry about the number at the meantime.

Last edited by teo : Wed Oct 31, 2012 at 10:27 PM.
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Old Thu Oct 4, 2012, 09:22 PM
teo teo is offline
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Quote:
Originally Posted by triumphe64 View Post
There is a lot in these messages to digest. I have Pure Red Cell Aplasia. It is quite rare. It affects only my red cells and Hg. The Reticulocytes, immature red cells, fail to form. It took me three BMBs before the pathologists determined that is what I have.

Since your mother seems to be ok with her white cells and platelets, the doctors might consider that as a possible diagnosis.
Hi Triuphe64, Thanx for sharing the information. Actually now when the doctor mentioned about taking blood, blood transfusion and whatever relevant to needle, she was shivering as she had bad experience in the goverment hospital. The hospital normally send the trainer nurse to take the blood for CBC check as they want to find out the HB and RBC before the blood transfusion but it tooks 2 or 3 nurses to try before they managed to withdraw the blood. Now her both hands are covered with bruise.

As my mom is phobia to needle now, we are trying to avoid all the medication/checks that involve needle at the meantime unless it is necessary. Actually we plan for another BMB to find out what is the latest status on her bone marrow but we postpone it now.
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  #13  
Old Thu Oct 4, 2012, 09:25 PM
teo teo is offline
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Smile

Thank you for the support Chirley. Definitely i will keep asking even the doctor gets angry.
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  #14  
Old Fri Oct 5, 2012, 12:23 AM
Hopeful Hopeful is offline
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I will take a stab at the BMB report for you...

Bone Marrow Cytogenetic Report Bone Marrow Aspiration
Bone marrow aspiration taken from right PSIS
Specimen : Bone Marrow No fragents obtained
Collection Date : 10/01/12 Smear was hypocellular with occasional
myelocyte, neutrophil and normoblast seen

>> hypocellular means few cells. So your mom's marrow is emptier than expected for someone her age. This could mean that something is attacking her cells (as seen with aplastic anemia and some forms of MDS) or that there is something wrong with her ability to make blood cells (as seen with MDS, deficiencies, and other conditions).

Clinical Diagnosis : Myelodysplastic Syndrome No blast noted

>> No blasts is good. High blasts are seen with some forms of MDS and leukemia. So why the MDS diagnosis? This doesn't make sense.

Comment : Very few cells and No Mitosis were obtained from this specimen

>> Again an empty marrow is being reported. I'm not sure about the significance of "no mitosis".

Iron stores were not assessable

>> They couldn't measure iron levels, but this could be because the sample was inadequate to do the measurement.

Date report : 16/1/2012
Bone Marrow Trephine

Trephine biopsy consisted of fragmented marrow with blood clots
Bony trabeculae appeared thin
Intertrabecular spares were 10% cellular with increased fat spaces
Occasional megakaryocytes seen

>> Empty marrow. Only a few platelet precursors seen (megakaryocytes).


Interpretation
Bone Marrow Aspiration
Hypocellular marrow
Await Trephine

>> The aspirate is inconclusive for MDS. It just mentions an empty marrow. There is no mention of dysplastic or ill-formed cells or increased blasts, as would be seen with MDS.

Bone Marrow Trephine
Hypoplastic Anaemia

-----------------------------------------------------

I would ask the doctor why he is calling her condition MDS. I would be hesitant to try MDS treatment (Vidaza, Dacogen) without a conclusive diagnosis. Was your mom sick while taking the cyclosporine? I ask because viruses can bring down counts, and it can take a significant amount of time for an already struggling marrow to recover.

The shushing sound that your mom hears in her head is a symptom reported in aplastic anemia. She may be hearing her blood pounding through her veins when her HGB is low. I remember hearing this.

Did they do cytogenetics on her marrow sample? There is no mention of this in this report.

It would be good to get another BMB done since this one seems inconclusive.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Fri Oct 5, 2012, 04:33 AM
teo teo is offline
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BMB reports

Hi all,

Let me reorganise the bone marrow reports. Just noticed that it is a bit mess up. Sorry

Specimen : Bone Marrow
Collection Date : 10/01/12
Clinical Diagnosis : Myelodysplastic Syndrome
Comment : Very few cells and No Mitosis were obtained from this specimen
Date report : 16/1/2012


Bone Marrow Aspiration
Bone marrow aspiration taken from right PSIS
No fragents obtained
Smear was hypocellular with occasional myelocyte, neutrophil and normoblast seen
No blast noted
Iron stores were not assessable

Bone Marrow Trephine
Trephine biopsy consisted of fragmented marrow with blood clots
Bony trabeculae appeared thin
Intertrabecular spares were 10% cellular with increased fat spaces
Occasional megakaryocytes seen

Interpretation
Bone Marrow Aspiration
Hypocellular marrow
Await Trephine

Bone Marrow Trephine
Hypoplastic Anaemia

Last edited by teo : Wed Oct 31, 2012 at 10:29 PM.
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  #16  
Old Fri Oct 5, 2012, 05:11 AM
teo teo is offline
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Hi Hopeful,

Thanx for helping to interpret my mom bone marrow report. Appreciate that.

Actually my mom is fine when taking the cyclosporine as long as her HB and RBC are on the normal level. Basically the cyclosporine treatments is on-going for first 3 months (1 tablet=25mg) and then next 3 months (2 tablet) with 2 packs of RBC transfusion every month. After the CBC checked every month, there were no signed of improvement seen on the HG and RBC. As there were side effect on this medicine, so the doctor stopped it.

According to the doctor, based on the bone marrow report on the interpretation which showed "Hypocellular marrow and Hypoplastic anaemia, then the treatment should be cyclosporine. This is the explanation.

As you mentioned in the interpretation from the report, the doctor conclusion is something wrong with her bone marrow ability to make enough blood cells.

FYI, my mom did two BMB. One with goverment hospital which the specialist says the tests was not details enough as some of the test is not done, so the 2nd BMB was done by the doctor as the attached report. This BMB was from early this year as my mom was shivering when we told her that she might needs to go for another BMB. So at the moment, we postpone the test. We will try to convince my mom that it is okie for the BMB in order to find out the reasons.

Did they do cytogenetics on her marrow sample?
Answer : I thought the report with "Bone Marrow Cytogenetic Report" meaning they did the test ????

Can you please send me a complete tests example for BMB as i really have no ideas on how to ask the doctor about this. I can only trust his professionalism and expertise.
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Old Fri Oct 5, 2012, 05:29 AM
teo teo is offline
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Hi all,

I will list down what further tests need for my mom. If you think i missed out anything, please feel free to add on this post. Thank you in advance for your kind input.

Further test
1) EPO test
2) BMB --- Make sure there is Cytogenetic report
3) hemochromatosis
4) serum ferritin --- sometimes
5) Copper and arsenic

What has been done and treatments before and now.
1) Vitamin deficiency checked --- Serum Ferritin & Serum Folate
2) Serum ferritin checked --- 4877 at the moment. Treatment in 2 weeks as we need to ask the goverment hospital to find the drugs.
3) BMB x 2
4) cyclosporine -- 6 months. No sign of improvement on HB & RBC. Stopped by doctor
5) Blood transfusion every month --- 2 packs/month on-going

Last edited by teo : Sat Oct 6, 2012 at 10:11 PM.
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Old Fri Oct 5, 2012, 10:34 AM
Hopeful Hopeful is offline
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Teo,

Is it true that your mom was only taking 25mg or 50mg of cyclosporine per day? If so, I'm not surprised that it didn't have any affect!

The therapeutic dosage for cyclosporine is 5mg per kg of her body weight per day. So, someone weighing 50 kg (for example) would take 50*5 or 250 mg of cyclosporine per day. This dosage is typically divided between morning and evening to maintain a more stable level in the blood.

If your mom wasn't taking a therepeutic dose, perhaps you could talk to your doctor about giving cyclosporine a real chance.

The cytogenetic report looks at the actual chromosomes in a couple of cells. It counts them and makes sure they look normal. I don't see any results that would indicate that this test was done. If cytogenetics were done, the results would come back in a totally separate report.

Mitosis is the copying of chromosomes when the cells split. Since they didn't see any mitosis in the sample, maybe they couldn't count the chromosomes to do the cytogenetics??? Just a guess...
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Fri Oct 5, 2012, 10:51 AM
teo teo is offline
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Hi Hopeful, actually she took cyclosporine 3 times a day. Meaning to say the first 3 months with 3*25mg and the next 3 months with 2*3*25mg. Sorry for not stating clearly. my mom weight maybe around 45kg. I will recheck with the doctor about your proposal. Also the cytogenetic report as well. Thanx for the advice.

One more thing that my sister told me today. Actually the doctor gave another type of medication to my mom but because of gaining weight for 3kg after only 1 month plus on medication, the doctor stopped it and prescribe cyclosporine. I will update the medicine names here after i have it.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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Old Fri Oct 5, 2012, 02:57 PM
Birgitta-A Birgitta-A is offline
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MDS

Hi teo,
I admire you for trying to understand as much as possible about MDS in a very short time. Remember that many of us have been reading about these complicated diseases during many years.

As many members already told you it is very important to examine if your mother has MDS or some other disease. A very common cause for low HGB is vitamin B12 defiency - I am sure that her doctor has examined that vitamin.

At pages 6-7 in these guidelines you can read about what tests should be done http://www.nmds.org/Nordic-Care-Programme

The BMBs from your mother have not been OK - she must have one more under sedation. It is very important to have a diagnosis before any kind of treatment.
Kind regards
Birgitta-A
Started treatment with Thalidomide + Prednisone June 2010. In Sept 2010 I received the latest transfusion. Now my counts are slowly decreasing.
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Old Fri Oct 5, 2012, 05:31 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by teo View Post
Hi Hopeful, actually she took cyclosporine 3 times a day. Meaning to say the first 3 months with 3*25mg and the next 3 months with 2*3*25mg. Sorry for not stating clearly. my mom weight maybe around 45kg. I will recheck with the doctor about your proposal. Also the cytogenetic report as well. Thanx for the advice.

The first 3 months of cyclosporine were probably too low to do anything. The next next 3 months were within the perceived therapeutic range (3-5 mg/kg/day), but towards the low end.
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Fri Oct 5, 2012, 08:54 PM
teo teo is offline
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Hi Birgitta-A, Thanx for the link. I will have a look.

Actually the vitamin deficiency test was given upon the request from us. The doctor says there is no records for that and it will take roughly around 1 or 2 weeks to get the results. At the moment, we are still waiting for the report for Serum xx-B12 and Serum Folate (I have a scan copy from my sister which is not quite clear on the name of the tests)

About another sedation, yes we will try to convince my mom to go ahead ASAP as to find out further whether she actually has MDS or other disease.

Hi Hopeful, do you think we should try for higher dose of cyclosporine ? I will bring this up to the doctor.

Thanx for the good advice from all. Really appreciate that.

Have a nice weekend.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015
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  #23  
Old Fri Oct 5, 2012, 10:31 PM
Hopeful Hopeful is offline
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Hi Teo,

You first need to rule out B12 and Folate deficiencies, as these can negatively impact blood cell production and mimic other diseases. Aplastic Anemia is a possibility, but this diagnosis is usually made when all others fail. Copper and arsenic are other tests that are typically checked while looking for a diagnosis.

If everything else comes back normal, and her diagnosis is aplastic anemia or hypocellular MDS, then I would discuss with her doctor trying cyclosporine again at the proper dosage. Make sure the doctor is closely monitoring her kidney and liver function while she is taking it.

Your mom is lucky to have you supporting her through this!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #24  
Old Sat Oct 6, 2012, 03:48 AM
teo teo is offline
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Location: Johor, Malaysia
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Hi Hopeful, i will ask the doctor to do the tests that u and Birgitta-A mentioned before in order to find out what is the best treatment for my mom.

FYI, i am not with my mom as i am currently working oversea, actually my sister is the one that accompanied my mom when she first diagnose with MDS. One pieces of information that makes me feel sad now is i received the answer from the stem cells medical adviser that my mom age is not suitable for stem cells transplant. Also the hematology that treats my mom now saying he would not recommending VIDAZA or DACOGEN because of her age as well. Seems the only option for my mom at the moment and future is just blood transfusion. This is what been informed by the hematology doctor after trying the cyclosporine - no response.

Personally i dont think blood transfusion is the good options as it will/might make her body weak/prone to other illness sooner or later and create even more bad blood cells. Just curious, has anyone that have the blood transfusion continuously for more than 5 years, "i simply quote a time" and still living as they used to be ? sorry if i asked a rude/impolite question. I just want to find out as the doctor told my sister that the ONLY option for my mom is just blood transfusion.

Thanx all again to provide me with good and informative information that ease my worries. Still i am worry everyday that i might lose her, As i am working oversea now, will only be able to be home around this december.

I just recall one more thing, according to my sister, the goverment hospital gave the injections of B12 to my mom before but they stopped it after a few times trying. There might be vitamin deficiency for my mom as the goverment hospital still gave her different kind of vitamins. I will list the vitamins name here once i have it.
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Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015

Last edited by teo : Sat Oct 6, 2012 at 10:13 PM.
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  #25  
Old Sat Oct 6, 2012, 08:38 AM
teo teo is offline
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Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
Hi all,

I just confirmed again the attachment received from my sister that the cytogenetic results is as below.

Clinical Diagnosis : Myelodysplastic Syndrome
Comment : Very few cells and No Mitosis were obtained from this specimen

Hi Hopeful, i think you are right about your statement about mitosis. Mitosis is the copying of chromosomes when the cells split. Since they didn't see any mitosis in the sample, maybe they couldn't count the chromosomes to do the cytogenetics.

Any other way for the doctor to count the chromosomes if there were none found on the bone marrow ?

I have doubt now, if the mitosis is not happening at all on the bone marrow, how come my mom WBC and Platelet are normal but there were less RBC along the time. This does not make sense to me. If anyone have the similar case as my mom, no mitosis on the bone marrow. Much appreciated if you can shed some light. Thanx.

Some info from the web http://www.mybloodyourblood.org/biology_stem.htm if you are interested.

Copy some of the info from the web
Bone marrow looks like a network of tiny little connected caves, similar to a honeycomb. Inside are very special parent cells called stem cells. A stem cell can divide itself and produce a twin. This process of cell division is called mitosis. Through mitosis, the stem cell can keep on creating more and more stem cells just like itself.

The stem cell can develop into all the other different blood cells as well! The stem cell can actually "differentiate" into red cells, white cells and platelets!
__________________
Teo, son to Goh, age 71 dx mightbe MDS with low HB & RBC Jan 2012; FE 7755 on Nov 2014 - 6*500mg ferriprox; BT every month since Feb 2012; BMB done July 2013 - no conclusive evidence of MDS or PRCA; EPO stopped Nov 2013; Danazol 200mg*2 starts Nov 2013 + cyclosporine 25mg*4 starts June 2015

Last edited by teo : Sat Oct 6, 2012 at 11:56 AM.
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