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Originally Posted by junglegirlsue
Hello! My Mom was diagnosed with MDS this week. She is 73 and hers came from chemo from breast cancer treatment 10 years ago. She is low in red blood cells and has excess blasts. They are going to keep her going with transfusions. I have a couple of questions.
Can you do anything to make the transfusions last longer? She is very active. Would it help it she cut back on her activities? What about excercise? The dr said ok if you want to. My position is save your energy for what you really want to do like play bridge and leave the housework and chores to me. Sounds like paradise to me but makes her mad. She thinks I am babying her too much.
Also the doctor said iron problems won't hapen until 100 transfusions. The literature from the MDS foundation says it is around 24. Has anyone had problems with this?
My son and I live with my Mom. We love her and want her around for years to come. I would love to hear advice from people who have lived with this for years. Thanks!
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Hello and welcome,
I have just joined this group recently, too. I was thrilled and relieved to find this forum. I have found everyone to be very nice and extremely helpful.
There are several of us on this list now with parents who have MDS.
My Mother, 79, has MDS-RARS. It is refractory from chemo for lymphoma a few years back. She is taking Aranesp shots every two weeks. Her bloodwork is improving each 2 week check VERY slightly but we are still thankful. She has been extremely weak and fatigued but the past 3-4 days, she has felt somewhat better. Again, we are thankful. I have no experience with transfusions but I know there are those on this list who will be answering your questions.
You will find much info here both in recent posts as well as in the archives. There is alot to learn about this disease and while there is info on the net, the great thing about this site is you are hearing from people who are experiencing it all first hand. They give me hope and we all need that!
I do hope your Mother will do well with her treatments and have many more years with you and your family.
Sharon