[deeno]

I have been reading a lot of MDS threads, but this is my first post.

My dad, 79, was diagnosed late in March with MDS RAEB-t when he went to the emergency room for uncontrollable bleeding. The week before he had a mysterious very high fever and weakness, now we know it was part of MDS.

In the hospital, he received blood/platelet transfusions, and a BMB. The specialist wanted to start him on Vidaza right away, but my dad refused. He simply is unwilling to go to the clinic for Vidaza/Neupogen transfusions, claiming “Quality of Life, and that he doesn’t want to spend a fourth of his remaining life in a medical clinic”. He is not very mobile, it’s about a 45 minute drive, my mom can’t drive him, and I think the thought of getting there 5 consecutive days overwhelms him.

In 2008 an operation to remove a tumor on his spinal cord left him barely able to walk, yet he has a nice peaceful sedentary life by the beach, but the doctor strongly wants him to start the Vidaza. Reading the threads, I’m afraid that the Vidaza will make him worse, and that he won’t ever recover from the setback, although plenty of MDS bloggers seem to have trouble with Vidaza initially, then it starts working.
It’s so hard to know what’s caused by MDS transforming to AML vs side effects of Vidaza.

I would love to hear from bebop, and anyone else with thoughts on not choosing treatment. I guess he would receive palliative care. The doctor talked him into starting Vidaza once, but my dad cancelled at the last minute. I’m flying in for his next doctor’s appointment.

It’s very sad and discouraging, but at the end of the day, it is his choice.
With prayers of thanks for all the forum posters before me - deeno