New to MDS

[Maddie]

My father was diag. w/MDS-RAEB in October. He has received 3 Vidaza treat. and has just begun his 4th. His Dr. indicated that if the treat. did not work he would stop Vidaza and start w/Revimid. Has Vidaza worked for anyone w/RAEB (blast 11%)and how many treat. did it require? Also, anyone know of a side affect of Vidaza of “pounding in the head” at night.

[Kathy G]

My Dad was diag in Nov 03 but it stayed stable for a year. He too started Vidaza in Jan 04 (he’s had 2 rounds) and his blasts in the blood have come down – he hasn’t had a BMB since he started so we’ll see. The only thing is his WBC has gotten quite high and it’s always been low.
I don’t think he has the pounding in the head. He hasn’t had too many side effect just feels lousy during that week.
Good luck to your Dad and please keep posting with his results.

Kathy

[PamyRn]

Kathy does your Dad have MDS or AML?? You said the blast count in the “blood” has gone down (my impression is if blasts are showing up in peripheral blood then that indicates there is alot of blasts=AML)but the WBC count is high. The day my WBC count, which was always low, went from 9-17 in one week they did a peripheral smear and the blasts showed up in my blood and they said I converted from MDS to AML and immediatly went into hospital the next day for a “round” of chemo.
Best of luck with your Dad
Pam

[Kathy G]

MDS and evolving CMML. The blasts in the blood were 10% to start and are now down to 4% after 2 Vidaza treatments. His BMB in Nov was 8-10% blasts. I think it depends on how high the blasts are in the blood before it’s AML. His doctor does not think it’s AML but they are checking his numbers several times a week. It’s so confusing. He starts his 3rd round on Monday.
I just pray he keeps responding to the Vidaza and it’s our answer for now.

Kathy

[Terri]

Maddie, my husband is on the Vidaza his second time Last year he did six rounds it got his blast down, After 7 months they started increasing again. October they were at 14% and now he is on his fourth Round this time again and it seems to be working, the Whites are down. His other counts are holding. I hope it works for your Dad. Only side effects some nausea (medication helps this zofran odt) and the bruising where the shots are given. He gets tired as well

[Maddie]

Terri

Glad to hear things are working for your husband. Dad’s Dr. originally said that he should know if Vidaza was working after the 4th treat., but it may take 5 or 6 treat. Now he’s wants to stop treatment after this 4th round if his counts aren’t up. We’re confused as to why he would discontinue treat. We’ve also asked for Procrit to help with transfusions issues, but he’s against that for now as well. I notice that your husband is on vidaza as well as procrit. Has the procrit helped reduce the need for transfusions? One other thing, what vitamins and supplements does he take, and do they help? Thanks for all of the info…this is new to us and I’m trying to become educated on anything that will help him now and our options for the future. Thanks again…and continued good wishes for your family.

Debbie
Dad (66) RAEB Oct 04 11%blast vidaza

[eve]

maddie

just a suggestion – why don’t they do a bmb to see if the vidaza has help him with the blasts – then you will know if it is working –

eve

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