Frustrated

[andysdondi]

My 83 year old dad was diagnosed with MDS late last year, they were giving him weekly injections of procrit and Nplate which seemed to keep his numbers at not a great level but not bad. The doctor decided he was not happy with the results of this treatment and started him on Vidaza. He has had 3 cycles of Vidaza and his numbers are in the gutter with no sign of improvement. They also gave him a Neulasta injection which my dad had a very bad reaction to. Now they are giving him weekly blood and platelet transfusions while they try to figure out the next step. I feel like they are just experimenting on my dad and have said as much, the doctor was offended. My dad’s quality of life has deteriorated so much in the last few months. I am frustrated and exhausted and have no idea what to do. anyone have similar experiences?

• This topic was modified 7 years, 7 months ago by andysdondi.

[Anonymous]

Thank you for sharing information on your father’s health. Your father may not see any improvement in his health until he has taken Vidaza for at least 4 to 6 cycles (about 4 to 6 months). And as is the case with many other MDS treatments, he may feel even worse before he feels better. Vidaza is a hypomethylating agent and it works by getting rid of the bad cells, but, unfortunately, in the very beginning of treatment some of the good cells get deleted as well. This actually is an indicator that the drug is working. Then typically around the 4 to 6 month marker, you should see a rise in his counts. The doctor will monitor him to see whether or not it is working for him. So it’s important to stick with treatment to give the medicine a chance to work.

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