I relapsed in 2011, eight months following a MUD SCT for MDS. At the time, I was told that a second transplant wasn’t an option due to congestive heart failure. I was started on Vidaza (IV), 7 days every four weeks. My counts didn’t recover fast enough to begin the next cycle, so my doctor cut back the infusions to 5 days every six weeks. It seemed to be the magic number, even though it took nearly 18 months before I was transfusion independent. I’m so grateful that he didn’t give up on me.
I am now on my 74th cycle of Vidaza and I just celebrated the 10th anniversary of my transplant. My hematologist at the Center of Excellence, believes that the treatment has created a graft vs. leukemia response. I have been told, by more than one doctor, that I am in unchartered territory. A little over a year ago, I had a hysterectomy and bladder repair. My treatment ended up being delayed an additional 4 weeks to give me more time to heal after the surgery and also because of a bladder infection. My counts were all within the normal range for the first time since before this journey began. I met someone in a MDS group on Facebook who also had relapsed after a SCT and had been on Vidaza for 8 1/2 years. She decided to discontinue treatment and is doing well almost 3 years later. I brought this up to my doctor, but he was very hesitant to stop treatment altogether. He felt it was too risky, however, he did agree to space out the cycles to every 8 weeks. Since initiating this protocol, my platelets are around 40k ten days post treatment and ANC has been between .7 and 1.2 at four weeks. I was concerned that maybe we should revert back to the 6-week schedule, but his feeling was that my bone marrow was just growing tired due to all the treatment I have received. My hematologist at the Center of Excellence and my local hematologist are both in agreement. I’m curious if anyone has heard of a case similar to mine? If there is any hope of stopping treatment and living a normal life I want to know. This is something that has been weighing heavily on my mind lately.
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