How long can we be on azacitidine (Vidaza)?

Posted by dchavian @dchavian, Feb 26, 2019

,m 68 years old, being with MDS for the past 3 years, 2 and haft years on Vidaza, seems working fine , but for the past month my Hemo goes down , ( I only got problems with my Hemoglobin levels no other problems , and barely symptoms ) to the point I needed a Blood Transfusion last month, Vidaza 5 days every 5 weeks , and Haranex injection every week , I saw the Transplant specialist and seems like I want a good candidate, I,m in Miami, Silvester Comprehensive Cancer Center , great doctor , fantastic nurses ,but still wonder how long with hat be, Doctor say for a lifetime , but how long is that period ? Wish you all the best of luck

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miketllc3 | @miketllc3 | Mar 27 1:37pm

In reply to @miketllc3 "I have MDS and have been on Vidaza for 3 years, (36 cycles) 5 days every..." + (show)

@miketllc3 -Just updating my response from last year. I have been on Vidaza for 4 years (49 cycles) - 5 days every 5 weeks. I was on 7 days every month, but cut it back to 5 days. I am 76 years old too. My labs continue to be in normal ranges. I have asked my doctor, but did not get a clear answer. Hey, we are alive. I would guess it is going to be for life. I have responded well to the treatment. Again, Well wishes to all.

n1128q | @n1128q | May 1 9:35pm

I have cytopenia and intermediate stage MDS. My doctor has me on a schedule of 5 days a week of Vidaza, then 2 weeks off, then 2 days of Xario. I have had 3 cycles and begin the 4th on Monday. When I asked how long I would have to be on Vidaza, she said "until it stops working". Is this normal? How long should I have to be on this? I am 75 years old and due to CAD, am not a candidate for stem cell transplant.

Lori, Volunteer Mentor | @loribmt | May 3 1:51pm

In reply to @n1128q "I have cytopenia and intermediate stage MDS. My doctor has me on a schedule of 5..." + (show)

Hi @n1128q Welcome to Connect. Vidaza is a frontline medication for patients with MDS. I can see from your standpoint that the comment from your doctor about taking Vidaza ‘until it stops working’ may sound a little abrupt. But that is an honest answer.
MDS doesn’t often go into remission and the only potential cure at this time is a bone marrow transplant. However, patients can successfully be on meds many years in order to prevent the disease from progressing.

Cytopenia with MDS is common. It often causes a decrease in one or more blood cell groups. Is this involving your red/white cells or platelets? Have you required any blood transfusions?

n1128q | @n1128q | May 3 3:49pm

In reply to @loribmt "Hi @n1128q Welcome to Connect. Vidaza is a frontline medication for patients with MDS. I can..." + (show)

@loribmt
Thank you for your response. In answer to your questions, all of my blood cell groups are quite below normal, with platelets being a particular problem (I was hospitalized for extremely low platelet count about 6 years ago, which is how I came under the care of my HEMONC. While I did have two whole blood transfusions and two platelet transfusions at that time, I have not had any since. However, I have had 3 rounds of iron infusions over the past few years.

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