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Old Sun Jul 24, 2016, 10:01 PM
Annkilter Annkilter is offline
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Join Date: Jul 2016
Location: Grand Rapids
Posts: 3
MDS - Life changes

My husband received the diagnosis of MDS on June 10. He started Vidaza a week later. His type is RAEB-1. On April 20, they found blasts in his blood. Did a bone marrow biopsy on June 1. We went to Ann Arbor (University of Michigan) to be evaluated for bone marrow transplant. They concluded he was not eligible due to his weight loss, lack of strength, and IBS. He also has thrombocytosis, which has spiked to 1.2 million since he was told to go off Hydroxurea (a drug to control the platelet count). Since going on the Vidaza his white blood count has gone up to 6.9 and hemoglobin to 10.0. While on the Hydroxurea, his white blood count hovered around 2.0, and his hemoglobin was under 8.5-9.0. His bone marrow is 70% hypercellular. All three cell lines have some dysplasia. His peripheral blasts have gone from 1% on April 20 to 3% on July 18. His bone marrow blasts are 5-9%. At U of M, his peripheral smear had evidence of fibrosis. I don't know what is ahead, but his doctor said six months to 3 years.

So we have been making changes. The biggest one is to move with our daughter to a condo that she is buying. My husband is depressed about moving out of our house of 21 years to a condo. There is so much work to do, and he he doesn't have the strength to help as much as he would like. He is overwhelmed by the work involved. And he still wants to fix things up. But laying a little bit of tile in the bathroom floor exhausted him. He is frustrated about that. He feels depressed and scared and angry. I have done my share of crying, but I have to keep going so I stuff it down. I have too much to do.

We are struggling with his weight loss. He got new dentures in February for the first time and that is complicating his attempts to eat. Chronic diarrhea plays a role as well. Well that is enough doom and gloom for now.

Thank you for listening.

Ann
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