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Old Thu Oct 4, 2012, 12:40 PM
teo teo is offline
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Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
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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