[choijk]

Hi Everyone,

I just read through all through all the threads regarding MDS and those who have the condition as well as those whos family members are continually dealing with this disease.

My name is June Choi and I currently live in CA. I just found out last wednesday that my 71 year old dad is diagnosed with MDS. My parents kept it away from me because I was studying for the California Bar Exam and I just found out when I moved back home from San Diego. (I moved back up to LA on Sunday). It has been horrible ever since I found out.

I would like to share my dad's condition thus far, and hopefully someone can share some insight with me? It seems like the doctors are sort of apathetic to all this and I just don't know what to do at this point.

My dad collapsed (fainted) on 01/13/07 and was rushed to the ER. I don't really know any of the medical terms yet but I will share with whatever that I do know at this time. My dad's hemoglobin was around a 6.0 on 01/13/07. He was given a blood transfusion of 3 units. He was also given vitamin B6 and Frolic Acid at that time.

This past Thursday, my dad indicated that he felt nauseous and dizzy. I called the hemotologist at Kaiser and managed to get my dad a earlier appointment for today 03/12/07 instead of the 04/11/07 appointment (nearly 6 weeks later). My dad's blood was drawn and his hemoglobin fell from a 8.8 to a 6.6 as of today. He was given another blood transfusion today of 2 unit and he will be starting Vidaza as of Thursday for 7 x for 5 months. If this fails, Dr. Shar is recommending Revlamid.

I am so scared at this point. I been reading a lot of MDS online and found this website and joined immediately. I am a little relieved because Vidaza has been working on some of the members on this thread. I guess my biggest concern at this time is that the MDS might lead to acute leukemia. Any thoughts on this?

I would also like to get your thoughts on regarding whether or not my dad should be fully informed of his condition. My parents are both first generation Korean and although they do understand and speak English, they have a harder time understanding the medical terms and what the doctor has been informing them. Today was the first time that I accompanied them to the hospital. I explained to my mom everything the doctor told me. However, my mom is hesitant as to whether or not we should tell my dad. We don't want my dad to get the notion in his head that "death may be near." We want him to stay positive and keep a positive outlook. Any thoughts?

Plus my other question is, what is the life expectancy with someone with MDS? (espeically when someone is older and in their 70's?)

Thank you for all the information. I feel like my wolrd has been flipped upside down ever since I received this information. I will be praying for everyone on this thread when I am praying for my dad.

Sincerely,
June Choi