On 9/30/2009
SusanLB wrote:
Hi Winkie,
I am currently on my 6th month of Vidaza. I am taking 480 mg. once a month but i am also on a clinical research trial at MD Anderson for oral vidaza. I take 8 pills (60 mg.) seven days a week. I also had the injections my first round of chemo and I agree it was not real pleasant. The oral Vidaza is a wonderful way to take the chemo. I take one Zofran (anti nausea) tablet 30 min. before i take the chemo and have little to no side effects. The oral Vidaza is not FDA approved but hopefully it will be in the near future. Could you get intravenous Vidaza instead of injections? I could if I was treated here in Illinois but i do not have the confidence in my doctor here that i have at MD Anderson in Texas. I fly twice a month to Texas to get blood work and pick up my chemo. The Vidaza has not put me into remission yet but I am hoping it will in the next month or two. I have not had any blood transfusions since being on the Vidaza but my Monocytes are still a little high at 13%. How are your counts? Were you diagnosed with Myelodysplastic syndrome also? Do you have problems with you red blood cells, white cells or platelets? What has your doctor told you about remission or future? It's nice talking to someone else that has this same diagnosis. I have always been anemic and this is why I was originally sent to a hemotologist.
As far as my advice.....I don't see how you can not continue the Vidaza. I know it's a pain but the alternative is not good. Hang in there and we'll stay in touch.
Susan
Hi Susan,
Thanks for answering my questions. It's nice to talk to someone in the same boat. I'm pretty new to this (diagnosed 2 months). The oral Vidaza sounds great. I will ask about the intravenous Vidaza.
I was very healthy and went for a physical. The blood work showed large WBC. Then I went for a bone marrow test and they found Trisomy 8/CMML. It is my understanding that if you have CMML you have MDS. I was told CMML is a subtype of MDS.
I don't know my Monocytes count. My WBC is 42.6, down from 65.3 after taking Hydroxyurea for a week, but they took me off because my platelet count went from 117 to 36. I was off the Hydroxyurea a couple of week before starting the Vidaza and the platelet count went up to 51 and the WBC stayed the same. I haven't gotten my numbers after my first Vidaza treatment yet.
I am with Kaiser and have a lot of confidence in my doctor's. They said the survival rate is 12 to 60 months, but that it is very individual. All their treatment is to stabilize the numbers and keep it from progressing into AML.
I was just getting ready to retire and had big planes. I feel like I have stepped into a black whole. I have lost 50 lbs (good thing I was chubby) and have no energy. I just want to get well enough to enjoy what ever time I have left..... take a few trips, spend some of the retirement money. Oh well, you never know what is coming your way. Can I ask how old you are? I am 66.
Winkie