[teo]

Hi Birgitta-A,

Thanks again for sharing all the medications used and the explanation. Congrats to you that u are BT independent now.

Actually my mom was on hypertension and cholesterol medication, she has been taking these medication for more than 10-15 years i guess. The dosage is not high. Just half a tablet each.

Actually my mom is doing fine as well even with HB on 7, she just complains about the shushing sound on the brain and heartbeat is pumping faster. So now when she hears shushing sound on the brain, she knows she needs blood transfusion soon.

Is it a norm for BT patients to have irregular antibodies after few years ?

Actually for my mom, she has to go for blood test one day before and the BT is done 1 or 2 days later. For this case, is it because she has irregular antibodies ? Actually i asked my mom hematology doctor whether she needs a test for antibodies or not, the answer is NO.

According to my sister, the doctor was saying the costs for the full treatments (either Vidaza or Dacogen) is around US50K and there were severe adverse effect and my mom might not response to the drugs. So the doctor was recommending NOT to go for Vidaza or dacogen treatment. The doctor advices my sister that if we can provide my mom with good quality of life rather than quantity of life but in pain. He thinks my mom with be more happier. Actually my sister kind of accept the idea after talking to her friends and she tried to convince me. Anyway we will leave this option till the last minutes.

What i know so far from the internet is vidaza or dacogen is only recommended when the patient has high risk MDS. I dont know why suddenly the doctor mentioned about this option when he told my sister that my mom has RA MDS which consider low risk MDS. Maybe we asked too many questions about what other treatment options for MDS. Just my guess.