New to MDS
 

Hi ! My name is Mike and I'm new to MDS. My problems seem to be with the low platelets. I was tested yesterday and am now up to 30 ,last week I was at 21. I don't understand why they fluctuate but I guess that why it's a problem. The question I'm putting to all of you is that the Dr. wants me to participate in a trial using ATG. Is there anyone who has done this and what was your outcome? My other alternative is to have injections once a month for 5 consec. days with some sort of chemo drug. Any thoughts or words of wisdom would be helpful !

Hi Mike - I am sorry to hear about your diagnosis, but welcome. There are many of us here with varying degrees of bone marrow failure. Mine happens to affect my reb blood cells the most, although I do have lower wbc's and platelets. the counts do vary from week to week, and you will probably find this to be true with you also. I have no experience with ATG, although the second medications I think you may be referring to is Vidaza? It is injected for 7 days and then you are off of it for 21 days. If this is the chemo you are referring to, it didn't work for me. I did 4 cycles of it with no benefit.

If you have questions regarding meds or your diagnosis, there are plenty of people on this site to help you out. Don't be afraid to ask. Good luck

Hi Mike,
 

Sorry to hear about your diagnosis, but you have come to the right place to help you decide what you think might be best for you.
Kert has problems with WBC. and Platelets. He has been taking Dacogen since last oct. and he has done great with it. We have 5 more patients here in Rome, Ga that has MDS. and they are all on Dacogen and all are doing good. If you would like to call us feel free too do so. our No. is 770-547-4865 cell and home is 706-629-6487 We are on the call support team with AAMDS. Good Luck The Keys

low platelets
 

My platelets are 22. I was reading about a trial drug AMG531 in which there are trials and I intend to ask my doctor next week about it as it is suppose to increase platelets.

Amgen is currently recruiting for a few AMG 531 trials for MDS patients, as listed here and here.