[Lillian]

Hello
My husband (Randy)was diganosed with MDS, RAEB type 2 IN Dec. 2001 Blast cells were at 11. He was 58 when diganosed.
Up until Oct. 2006, all either doctor he seen just checked blood labs, or did bone marrow biops. See you in 6 months.. Finaly found a Hemotologist that did more than just watch.. He started in Oct. 2006 on VIdaza. After 6 months they had to stop treatments.. Randy became chemo resistant. Next they tried. Trioxide (Arsenic) After 4 months they had to stop due to causing longation of heart beats. Next they tried Decitabine.. Again Randy became chemo restistant. Also with new bone marrow biop.. he now has deletion to chromosome 11q.
Now Randy has been given Revlimid. Started Monday.. March3, 2008.

To say I am worried about this newest Chemo..(Revlimid) IS beyond thinking.
Randy has had Heart disease for years. Quad bipass surgery in 1997. Aorta/ Illiac Anresyum graft bipass Oct. 2001. He has had 6 major strokes. He also has hypertention.
I have researched and read everything I can on any treatment Randy is put on. This one scares me.. Chance of heart attact. blood clots Ect..

With Conjestive Heart disease Already.. his risk are doubled..
Randy has never had to have blood transfusions. Which I have heard is one miracle we have had for him...

Right now I wait to see what happens with this new treatment. Praying it works. From what his doctor says this is about the only thing left to try.
Randy says if this one doesnt put him into remission than he is not going to try anything else..Should the doctor come up with something new.

For each of you with a Love one going threw MDS. For those of you who have MDS. MY Prayers are with each of you.
I am happy that I finaly found a place on the internet that has actualy postings for MDS.
I have searched via internet for chat rooms for MDS none around.
Don't go by prognosis you may read or are told. Randy has been here 6 yrs and prognosis for his form of MDS is 10 to 12 months.
Thank You all for listening.. I will be watching post and sharing as I can with you..
Lillian