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DAD DIAGNOSED WITH MDS JUNE 05

This topic has 4 replies, 1 voice, and was last updated 18 years, 4 months ago by sherrygal.

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December 27, 2005 at 5:16 am #11003

sherrygal
Member

My dad was being hospitalized about every 90 days for low platelets and anemia from July 04 to May 05. I happened to read an article on MDS and it sounded much like his condition. He had received a BMB in July 05 which we were told was inconclusive. I took it upon myself to find a hemotologist and got copies of the BMB which said RA was found. Another BMB was performed by the hemotologist which was now CMML. He did not respond to Procrit and is now on Aranesp and is maintaining a hemoglobin count around 11. I am confused about what to expect and how long he can maintain. He is 84. The hemotologist tells me that Medicare will decrease the dosage of aranesp once he maintains for a period of time. Then, we will start back up when his bloodcounts go down. I don’t understand this.Does anyone have any knowledge in this area? Thanks!

December 28, 2005 at 1:12 am #11004

Jim
Member

I have been taking Aranesp for a couple of months now. My doc told me once my hemoglobin reached 12 and above, Medicare wouldn’t pay for it. I was receiving shots every two weeks until 11/21/05. Since then my count has ranged from 12.2 to 12.8–which makes me very happy Once it sinks below 12, I’ll start again.

December 28, 2005 at 4:31 am #11005

sherrygal
Member

Thank you, Jim. I am glad to know someone who is experiencing this and I am very happy for you to be above 12. Good luck.

December 28, 2005 at 11:44 pm #11006

bhanson
Member

Hi, Sherrygal
My husband had about 6 shots of aranesp a year ago and his Hemoglobin has maintained above 13 since then. We were worried about the Medicare thing, too, but when you need it again, you can get it. Our doc says below 11. Hope aranesp continues to help and don’t get discouraged. There is so much to know and everyone is different. Keep close tabs on the blood counts and with your hemotologist. Best of everything, bernard and bonnie

December 29, 2005 at 4:45 am #11007

sherrygal
Member

thanks Bonnie. I have been reading as many postings as I can to try to learn more about the disease. I am glad to hear that your husband is doing well. We are going for a lab on Wednesday and I am always apprehensive. I feel very confident in our hemotologist/oncologist. He is well known and has a lot of professional respect in this area of Texas. He has not had to be transfused since September 15th which is wonderful. Thanks for replying.
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