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Old Sat Feb 10, 2018, 12:04 AM
MichaelGregory MichaelGregory is offline
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Join Date: Feb 2018
Location: Los Angeles, CA
Posts: 3
Father diagnosed with high risk MDS.

Hi all,

Last Friday my father was diagnosed with high risk MDS RAEB-1 with a complex karyotype. He is 62 years old, and was diagnosed with idiopathic pulmonary fibrosis about 4 years ago, but remains active and in relatively good health except for this recent diagnosis of MDS.

A few months ago he was suffering from a pain in the back of his leg, which turned out to be a blood clot. While in the hospital for the blood clot, he underwent blood work that showed low blood counts. After having surgery to remove the blood clot he returned home, and the doctor ordered him to have a bone marrow biopsy. He was really drained from spending a week in the hospital, and put off the bone marrow biopsy for a bit over a month. On 1/19/18 he went for his BMB and received the MDS diagnosis from the doctor last Friday, 2/2/18.

My father lives in Avon, CT and my younger sister lives with him which I think will be really important in the coming times. I however live in Los Angeles with my wife, but I will be doing all I can from out here and visiting CT as often as I can. He has an appointment for a consultation at Dana Farber in Boston on 3/13/18, I will be flying back to attend with him, and hopefully find out what the care plan will be going forward. His local doctor suggested he would probably be getting a BMT, which I have been learning a ton about over the last few days. For now, his doctor wants to start him on weekly Procrit injections until he goes to Dana Farber.

I've been in a state of shock for the past week, and have just recently started doing research and learning all I can about MDS. I found this forum, and after reading hundred of posts it feels like a great community to be a part of. I am nowhere near prepared for the roller coaster ahead, but I am sure I will have tons of questions and hope everyone here can help me answer them. I'm scared for my father and the things he will have to go through, he is strong minded and strong willed, but this disease seems to be relentless. I know the complex karyotype is not a great thing, and I think his local doctor seemed more worried about that than he was the RAEB-1.

Well, that's all I have for now. I hope everyone can have an enjoyable weekend!

-Michael
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Michael, son of Gregory age 62; diagnosed with High Risk MDS RAEB-1 on 2/2/18. Currently waiting for consultation at Dana Farber in Boston on 3/13/18.

Last edited by MichaelGregory : Sat Feb 10, 2018 at 12:06 AM. Reason: Formatting
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