Vidaza not working after 4 years

[Marksa25]

Hello all,

My dad was diagnosed about 4 years ago with MDS at the age of 81. I believe at the time he had a deleted chromosome 5 and a monosomy 7. The diagnoses was not good... they estimated he had about 10 months to live.

He has been on Vidaza for almost 4 years and its been great up until the last 6 months. His counts are not rebounding and he's had to get platelet transfusions. The platelets have been as low as 11 and are at about 20 now and not coming back up.

The Doctor is saying we are going to stop Vidaza but no plan B was mentioned. Are there any other drugs he can take or anything else we can do?

Any input would be appreciated.

Thanks.

Mark

[Neil Cuadra]

Mark,

Maintaining counts for 4 years is a good record. It's too bad that your dad is no longer getting as good a response.

Is it correct that he has del(5) -- loss of chromosome 5 -- and not del(5q) -- loss of the long arm of chromosome 5?

Other aggressive treatments may not be recommended for an 81-year-old, but you could ask about Dacogen, an alternative to Vidaza that is thought to work similarly. Since you've been at this for years, you probably already know about this.

Supportive care can presumably continue with transfusions. If he'll need platelets regularly, I recommend asking about the methods they can use to lessen the chance that your dad will become refractory to the platelets he receives.

Are his red blood cell and white blood cell counts ok?