I am new to this form and am so glad to have found it. Maybe you can help with my questions?
My Mom is 80 years old and has been battling MDS for the past three years. She is transfusion dependent primarily for red blood cells. She tried Vidaza for several months, 5x/week, with 4-6 weeks between treatments, but the side effects of severe diarrhea and the severe constipation coupled with painful swelling of abdominal organs made her stop the Vidazatreatments about two months ago. Now she is getting transfusions every three weeks (it was five weeks), and has had a marked increase in tiredness. Also she is having heart problems, all of a sudden it seems.
Se is seeing Drs Lugar and Hexner at Univ of Pa about every 3-6 months and is being treated locally by a hematologist. But the two doctor centers don’t seem to talk very much if at all, so I am a little concerned. My Mom is a little stubborn though and she does not want to call the U PA doctors to get them involved right now…
My Questions are:
(1) Is there a hematologist that anyone can recommend in the greater Trenton NJ area who has a lot of experience with MDS patients?
(2) Is there a heart symptom that is commonly associated with MDS? If so, who should she see, a hematologist, cardiologist, or MDS Expert like U Pa?
(3) Maybe she should go back on Vidaza? Despite the painful side effects?
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