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Old Fri Jul 15, 2011, 06:20 PM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Dear Sandra,

I'm sorry to hear about the progress of your mother's MDS, but I'm glad that you've found Marrowforums. You are certainly in a very difficult position given that your mother is so transfusion dependent but is still responsive to transfusions. Those good days when she's feeling better and has more energy are certainly to be treasured now.

MDS RAEB-2 generally has a poor prognosis because the patient is essentially transforming to leukemia. Hospice care focuses on the patient's comfort and quality of life rather than on curing the disease. In this context, I think you could arrange that she continues to receive transfusions because they are restorative and alleviate discomfort/pain. Although it's not easy to stand by when an older person doesn't want to eat, it may be one way in which your mother's body is winding down. Hospice workers can help you understand your mother's nutritional needs at this point and plan a diet that suits her tastes and supports her energy level. I encourage you to visit the Hospice website and speak to the hospital's social worker about services that might be available for your mother's care.

There are many Marrowforums members who have been in your shoes. Every family is different and we can't presume to know what's right for yours, but I hope the collective experience you read about in the forums will help you now. Please don't hesitate to post your questions or just vent here.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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