Second round of Vidaza cut short

[David Spicer]

Today my husband (age 67, 25-year HIV survivor, dx RAEB-I in 5/17) and I went for the fourth day of his second round of Vidaza. The center we are using is Mission in Asheville, in consultation with Duke. The first round was 5 days of injections then 23 days of observation. With the Labor Day holiday, the fifth day of the second round was to be next Monday, but we were told that with today’s injections this round is now complete, and Monday’s injections were canceled.

We’re not sure what to make of this news. In the past few months my husband has needed platelets several times and red cells twice (2 units each), and Procrit is scheduled every two weeks. His platelets have been as low as 7 (9 today) and his neutrophils have lately been 0.1 . Could they consider him too ill for Vidaza this early into treatment? Our next consult with the hematologist is seventeen days away… anyone else had this experience?

• This topic was modified 6 years, 7 months ago by David Spicer.
• This topic was modified 6 years, 7 months ago by David Spicer.

[mdsfound]

Hi David, If you do not want to wait seventeen days to see the hematologist in Asheville, I can arrange a preferential appointment at one of our MDS Centers of Excellence. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. Please email me at ahassan@mds-foundation.org. I am happy to help.

[David Spicer]

Thanks for the reply. When we went in for today’s labs, the nurse made an inquiry for us. The center uses a five-day course for Vidaza and was closed for Labor Day (US), so the second round started Tuesday, Sep 5 and the fifth day would have come after a two-day interruption. They decided having the full rebound period was more important than getting the fifth day’s injections.

[Author]

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