end stages of aml

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end stages of aml

by cincygirl on Fri Jul 29, 2011 05:43 AM

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Please if you can help or let me know anything about the end stages of AML, i would really appreciate it.  My niece has been through the ringer.  She has had a bone marrow transplant and relapsed one-year later.  After that salvage chemo, which did not work. More chemo, which did not work and then just to buy her time Dacogen, which actually threw her into remission.  She ended up having a donor lymphocyte infusion which failed.  Anyway after all this, she now has 75% blasts.  She doesn't sleep unless we medicate her.  she is barely lucid-talking about things that make no sense....and repeating herself over and over.  She is mad that we called in hospice.  did we make the right decision.  Does she have time left that we are depriving her of?  What comes next?  How much time does she really have left?

RE: end stages of aml

by Temporary on Fri Sep 09, 2011 05:07 AM

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I am very sorry to hear about your niece.  My mother died of AML earlier this year.  Every situation is different and unfortunately, no one can tell you with certainty how much time a person has before they die.  My mother had 90% blasts days before she died.  One doctor said she had just one week to live, a little over two weeks later another doctor told her that someone of her condition lived an average of 4-8 weeks.  She died three weeks after the first prediction and just 4 days after the second prediction.  

I suspect that the pain medication is the reason why your niece is not lucid and is saying strange things.  Fortunately, my mother was lucid up until just hours before she died.  She had just started morphine one day before her death, but her previous experiences with the morphine was that it altered her perceptions and caused hallucinations.  My mother ran a high fever the last three weeks before she died.  Blood and platelet transfusions were no longer effective in providing comfort or in keeping her counts up.  At that point, she chose Hospice.  This is the right decision in the end and you should not second guess yourself.  

What I found interesting through this process is that the field of medicine is so advanced that we can extend life in so many different ways... if not for years then for months, if not for months then for weeks, if not for weeks then for days, and so on.  However, at some point it is best to let nature take its course.  In the end, my mother did get what she wanted... she died naturally in her sleep.  

We were fortunate that she was able to experience some quality of life after diagnosis and even when she did not go into remission after chemotherapy.  We were also fortunate that in her last few days, she did not suffer much.

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