[DanL]

Cynthia,

Platelets have been the bane of my MDS existence. I have not had a normal platelet count since 2010, but have been able to do well with extra precautions. While on Vidaza, I would see a a pretty routine cycle - good during the week of infusions, starting to decline the second week, hitting the trough on week three, recovering week 4 and continuing to improve during the new treatment week.

Everybody's response is unique to some degree. There are a lot of studies on Vidaza, and the categories of response are somewhat complex, but there are a couple of key indicators that as patients and caregivers that may be overlooked which are 1) stable disease and 2) progression free survival. The other difficulty is that best response is not easy to identify and can range from the second or third month of treatment all the way to the 12th month of treatment, although most responses come between months 4 and 6.

As for the never recovering counts - If this is happening, it is probably as much the result of the disease progressing as it is the effect of chemotherapy, which is not what we want to hear. When drugs like Vidaza and Revlimid are administered, their job is to help your body remove recognize and remove dysfunctional cells both in the marrow and the peripheral blood. The result of this is lower blood counts which may mean more blood and platelet transfusions. They also tend to suppress the marrow a little, so the new cells being produced take longer to get out. If the drugs are doing their job, fewer defective cells will leave the marrow, creating the impression that they are just lowering your blood counts. While true, it may be also indicating that the drugs are effective in meeting their objectives, which is why we need to give them time to reach full effectiveness rather than just jumping from drug to drug, especially in the absence of disease progression.

This is also why it is very important to work with doctors that understand your mother's situation well, that understand and work with MDS and other blood cancers, and that you continue to ask great questions from all of her caregivers. The tenured nurses also tend to be great resources for what is normal and what to look out for.