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Old Fri Feb 1, 2013, 03:33 AM
teo teo is offline
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Join Date: Oct 2012
Location: Johor, Malaysia
Posts: 117
mom's update and question

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.
__________________
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 : Fri Feb 1, 2013 at 03:47 AM.
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