MDS now progressing to AML and need to decide if time to start Vidaza

Posted by grat1963 @grat1963, Jul 6 1:11pm

My 67 yr old sister has been in the hospital since June 3rd and I have to make a decision for her. She was diagnosed with MDS July of 2024 with del 5q as well as the TP53 gene mutation. She went into the hospital in June for a UTI and pneumonia and eventually fell into a neurologic delirium and had to be intubated and ended up in the ICU. They discovered that her MDS is progressing towards AML - 12% blasts in the bone marrow now. Although she is now extubated and is beginning to wake up, she spends most of her days still mostly sleeping and has yet to talk. She also is still not swallowing so she's on a feeding tube. And furthermore, she had to go on dialysis in the middle of all of this! I am beyond sad for my sister and all of our family. The oncology team at the hospital wants me to decide about putting her on Vidaza. Has anyone here had any experience with Vidaza plus the TP53 gene mutation OR taking Vidaza while being on dialysis?

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Lori, Volunteer Mentor | @loribmt | Jul 7 10:21am

Welcome to Connect, @grat1963. Oh my gosh, it’s so sad to hear about your sister and all she’s going through! And you too! Watching a loved one enduring medical trauma like this is incredibly stressful as you feel helpless.

I’m glad that she’s starting to gain some progress with her recovery from delirium and her stay in the ICU. She has a long way to go though with getting off her feeding tube and the dialysis.

With her MDS progressing to AML, her doctors are suggesting Vidaza. That is a frontline drug for this type of leukemia with older patients who might not tolerate more aggressive chemotherapy. I haven’t been able to find any discussions of members who are on Vidaza along with having dialysis. Chemo, in any form, can be difficult for the kidneys to process. So I’m not sure how that would work with the dialysis. Hopefully there will be some input from others if they have experience with this.

In the meantime, is it possible to have a consultation with your sister’s oncologist to discuss the possible challenges the meds would cause while she’s on dialysis? Do her doctors feel the dialysis will be permanent?

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