End stages of MDS

[Dmassey]

My dad is almost 90. Has been treated with Aranesp for his MDS for two years. He doesn’t produce red blood cells. Recently has been diagnosed with swallowing issues and aspiration. Was hospitalized in August for cdiff colon infection, ecoli sepsis in blood, then again with aspiration pneumonia. He has chosen to discontinue all treatments and go home with hospice. My sister and I are taking turns staying with him. My question is what should we expect from here? There is very little information on the subject of end stage MDS. He had an Aranesp injection and a unit of blood while in hospital on August 11th. His hemoglobin was 8 afterwards when he left hospital. He has amazed us all as he is still mobile and his decline has been very slow after two months with no treatments or meds of any kind. He has begun producing bloody phlegm. Is this part of what happens near the end? Can anyone share their experience so we know what to expect from here.

[Neil Cuadra]

Dmassey,

I'm sorry to hear that your Dad's health is failing. I'm glad he was able to make his own decision about hospice, since it's so hard for a family member to judge when further treatment toward a cure is not worth the decrease in quality of life.

Your question is a practical one, to help you and your family prepare. Because there are so many possibilities, nobody can say with certainty what your Dad's next weeks and months will be like, but we know what has typically happened with other MDS patients.

Supportive case with transfusions and growth factors like Aranesp can continue to be helpful, but your Dad's overall inability to keep up his blood counts will likely affect his organs and his ability to ward off infections. Quality of life at this stage benefits from appropriate pain relief, from the comfort of family and friends, and from the experience of the hospice team.

I've written about MDS end-of-life before, and so have others. I suggest reading the MDS: How do you die? and What can I expect in end stage MDS? threads, as well as reading the stories of other patients here.

Good luck.