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  #1  
Old Sat Feb 10, 2018, 01:04 AM
MichaelGregory MichaelGregory is offline
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Location: Los Angeles, CA
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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 01:06 AM. Reason: Formatting
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  #2  
Old Sat Feb 10, 2018, 01:32 AM
Neil Cuadra Neil Cuadra is offline
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Michael,

I'm glad you found this forum, and I hope we can help you.

It was lucky that your father's low blood counts were discovered so the MDS could be identified, but unlucky that he's got MDS, especially with a complex karyotype.

His overall good health is an important factor in his favor.

If you've looked through these forums, you probably know about the AA&MDSIF and the free packet of educational materials that you can request from them, and about the patient resources available from the MDS Foundation. If you haven't already ordered them or read the online materials, I suggest that you do so, and have your family in Connecticut do so as well.

His local doctor seems to understand what MDS entails, but he'll get the most information at his Dana Farber appointment in March. I suggest that you help him prepare a list of questions to ask (see sample). You always have to wing it a bit at an initial appointment, because you don't know what the doctor will want to discuss with you, but bringing a list really helps you focus on what you hope to learn.

Good luck to you and your family.
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Old Sat Feb 10, 2018, 01:40 PM
MichaelGregory MichaelGregory is offline
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Hi Neil,

Thank you for the kind words and helpful information. I have read most of what you have shared, but I will be sure to read it all and pass it along to the family in Connecticut as well. Thanks again!
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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.
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  #4  
Old Sat Feb 10, 2018, 05:41 PM
Emily59 Emily59 is offline
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Dana Farber is amazing. Make sure they arrive ridiculously early. Driving in Boston is not for the faint of heart. Even Siri was stumped. DF has their own parking lot but if they can afford the hospital's valet parking, I'd do that.

They will need to go to *registration* before they get their blood work done. It's on the same floor. Although it's tempting to stand in the lab line...keep walking past it to the registration area. I made this mistake at my first visit. Let's see. I think the cafeteria is on the 3rd floor. I believe it closes silly early like 4pm. I made that mistake too. The place is giant and when I was there so were 1,000 other people. But it was very well organized and everything ran smoothly, despite me. Everyone was very kind and supportive.

Best wishes to your dad.
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Old Mon Feb 12, 2018, 02:02 PM
MichaelGregory MichaelGregory is offline
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Emily,

Thank you so much for the helpful information regarding Dana Farber, and the kind wishes; it will be put to good use.

Have a great day!
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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.
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