Should I ask my wife's Dr. her expected life span?

[Jim Hermann]

“Thank you for your email with information regarding your wife’s health. It appears that your wife is in the intermediate-1 to high risk.” per MDS staff

Per her Dr. RAEB -1; IPSS-R score 6

My wife, age 72, BMT 21 years ago to the day she started her MDS tx, July 13, 2018 (Vidaza) every fourth week.
From what I’ve read on this site and elsewhere, the mean life expectancy is about 18 months from dx for her category. Her quality of life now is bottom of the barrel with fatigue so severe it’s almost beyond description. So far, she’s received 7 units of blood. Her MDS dx date is July 2017. Her initial dx 21 years ago was ALL.

We’ve always agreed that if death is imminent, why not stop treatment and try to live the remaining months with a decent quality of life. She is absolutely miserable.

I’ve not had this specific discussion with my wife and do not know if I should.

Do I remain silent or do we have the tough discussion with her Dr. and her?

I understand that no one else can make this decision but I’d sure welcome advice!

[rar]

4 years ago I was told I had life expectancy of 5 months. Life expectancy is a statistical average. Every day you wake up on the green side is a bonus day.

Ray

[Annette Cook]

I’m pretty much in the same situation with my husband, although his MDS has advanced to AML. He does not want to try a trial and is not eligible for further treatment because of his age (70). Just 1 week ago Drs. Told us he had days, maybe weeks but not months to live. But he has responded to steroids and IVIG, miraculously and they don’t know why. You might try and pin your doctor down about it. At that point you may be able to get hospice to help both of you. If you think talking about this will upset her more than she already is or make her lose hope, then don’t do it.

[rar]

I would disagree about being too old to be treated. I had a SCT at age 74.

Ray

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