[Joanne]

This forum has been a great help to me with helping me cope with my mother's MDS diagnosis and I felt the need to share this. My mom was originally diagnosed with RARS back in 2008 and was doing so well on her Eprex needles until February of this year when her hemoglobin was taking a nosedive. Her hematologist was stumped.
He chalked up her low levels to the mutation of Eprex and she has been getting weekly transfusions ever since. 2 units and her levels are only going up to 90.
To make a long story short - in between this time she was diagnosed with a neuroendrocine tumour (pathology was favourable) in the small bowel. This diagnosis was made after she noticed black tarry stool. We hoped the tumour was causing some sort of a GI bleed but unfortunately that was not the source. Further work up (months later) confirmed she has angiodysplasia in the cecum and the upper part of the small bowel. Number one side effect? Unexplained anemia!
Our hope is, once this angiodysplasia is fixed (via endoscopy and colonoscopy) this will stop the bleeding and therefore the need of weekly transfusions will stop and she will return to her E-Prex injections!
This was the news we were waiting and praying for! Anything but bone marrow failure!!
I just wanted to share in case other patients are having these symptoms of black tarry stool during transfusions. She had NO OTHER SYMPTOMS but this and was thinking the stool color was a side effect of the transfusions.
Never give up hope!