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MDS Myelodysplastic syndromes

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Old Sun Nov 11, 2012, 03:50 PM
Paula W. Paula W. is offline
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Location: Jackson, NJ
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Vidaza and Revlimid

Hi, just wondering if anyone has been treated with both vidaza and revlimid together. My mom is 79 and her MDS has progressed. She has finished her 3rd round of treatments with both vidaza and revlimid, so far no improvement in her blood and platelets.

My mom gets platelets approx 2-3 times a week and blood transfusions about 1-2 times a week. Her doctor was concerned that the blood loss is too quick and admitted her into the hospital. She had an endoscopy done and they found a bleed in her intestines and they cortarized it. Since they cortarized it, her blood has stabilized at 10.3. It took 3 platelet transfusions to get her to 57,000. This should last her about 2 days, if things go the way they have been. This has happened to her before, about a year ago.

My moms quality of life is minimal. She is either going for blood work or transfusions. When her blood drops, she gets so tired. When her blood is up, she feels so good and we try to enjoy those days to the fullest. She usually gets admitted to the hospital approx. every 6-8 weeks, for some reason or another pertaining to the MDS.

Just wondering if there is anything I can do for her mental state. I want her too keep the fight and the spirit, but it's hard for her. At what point will I know that her fight is over? We were told (not her) almost 2 years ago, that she had approx. 6-8 months, so we are blessed to have her with us today.

Before she started this new treatment, her blast was 15%.

Paula
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Old Sun Nov 11, 2012, 05:01 PM
Neil Cuadra Neil Cuadra is offline
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Paula,

Here's a suggestion. If her/your routine includes a lot of unavoidable time driving, sitting in waiting rooms, getting transfusions, or in the hospital, then look for ways to add more quality to that time. Invite a relative or friend to come along so you can all chat while riding or waiting. Bring photo albums and look through them together. Listen to her favorite type of music in the car. Ask around to see who would be willing to visit her or read to her during a hospital stay. Making these arrangements would be more work for you, of course, but it might be worth it if it takes some of the drudgery and boredom out of her routine.
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