My father's MDS has progressed to AML

[susaq]

Hi all,

My father (83 yrs) was diagnosed with MDS about 10 years ago and went through chemo for it about 4 years ago when he became transfusion dependant.

He had a hard time with the chemo and did better for about a year but revlimid was causing severe leg pains so he was taken off it. The leg pains never went away.

Over the past 4 months he has been feeling terrible, fatigued, weak, short of breath, nauseaus and became transfusion dependant. After going from doctor to doctor for diagnosis - all the time his hemo/onc was telling him that it wasn't his MDS - he has just been told that he could have leukemia by two doctors - one his hemo/onc. He's scheduled for a BMB next week for confirmation.

My question is what now? I'm thinking that chemo would be too hard for him and take too much out of him and probably be worse than no chemo.

I don't know what to expect now. I don't know how quickly he will need home care, is it painful, how do we find a good hospice provider - what should we be looking for?

I'm hoping that someone who has been through this will be able to help.

Thanks,
Susan

[Marlene]

Susan,

I would wait until you get a diagnosis. You can make yourself crazy trying to be proactive without adequate information to base your "next steps" on. If you can break this down into manageble segments it may be better. And the first step is getting an accurate diagnosis. Once you have a diagnosis, you can then focus on what needs to be done next depending on what the docs say. And you want to hear what all the options are and how your dad feels about them. As well as getting a second opinion. If you can be there when he sees the doctor at the time they give the results, that would be a good thing. They can also hook you up with a social worker at the clinic or hospital who can help you through some of this.

I've spent plenty of time planning for all the "what ifs" only to stress myself out over things that just never came to pass.

Marlene

[susaq]

Thanks, Marlene, you're right. Take it one step at a time. I got overwhelmed there for a few minutes but am feeling a bit more in control right now. It's just such a lousy thing if it is AML...