Changes in Treatment

[Calimom]

My mother is 80 and has MDS. She was stable for 3 years and the last two she's been on Procrit/Aranesp injections. In January when they checked her blood count she was at 7.5. She got a transfusion of two unit and a double dose of Aranesp. Three weeks later she was 9.5. Double dose of Aranesp and Friday she's down to 7.5 again. She's scheduled for two more units of blood this week.

How many transfusions until they consider you transfusion dependent?

She's a "snow bird" and lives with me during the winter months. In April she will be headed back to North Dakota and living alone. She doesn't have any symptoms...just really tired some days. I did notice some memory problems last week and a lot of yawning and coughing.

Is it possible for her numbers to crash and her to be unable to get out of bed one morning? Is it time for a more assisted living environment? The fact that she doesn't have symptoms worries my siblings since she doesn't know it's happening. My siblings and I have decided we are going to put a limit on her driving (no driving under 9.0). I'd hate for her to hurt someone while driving.

Thanks.

[Birgitta-A]

Hi Calimom,
Your mother is now perhaps transfusion dependent - patients that need 2 units/month or more are considered transfusion dependent. Good that she responded so well at Procrit/Aranesp injections!

Transfusion dependency is very common among MDS patients - I was transfusion dependent at diagnose 2006 with a HGB of 7,0.

It is important that her blood is tested often - I do blood work every other week except when I try new drugs when my blood is tested every week due to low white blood cells.

There are some other test results that are important - a kind of white blood cells called neutrophils (fighting infections) and platelets (helping the blood to cloth).
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, transfusion dependent 2006-2010 when I started treatment with Thalidomide + Prednisone. Good response 33 months but now I have received 2 units of blood. I will probably try Revlimid + Prednisone.

[bebop]

maybe it is time to think about having her to continue living with you or one of your siblings. I don't like the idea of her living alone with this going on and certainly not her driving. she could have a bleed if her platelets are low as well.

[Calimom]

Thanks. Right now my brother, sister and I are all on the same page. If she should require another blood transfusion in 6 weeks we will have to have a serious discussion in May at my nephews wedding regarding her living arrangements. She'll only be alone in Fargo for about a month before heading to the wedding at my sister's. If necessary, my sister will just keep her until the end of June and drive her back for a family reunion and pack up her apartment then and we will move her in with us. My sister and I will take turns with her...I'll get winters/fall and she'll get spring/summer. My brother travels a lot but has said he'd do whatever he can to support us...he'd take care of her if he could, but his job just doesn't allow for it and it would fall on his wife-she's currently dealing with her 94 year old dad who's failing.

Thanks for the support.