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#1
Thu Oct 21, 2010, 03:57 PM
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New guy here for my dad
I'm coming here to learn. My dad's 75, diagnosed a couple of years ago, not sure which type of MDS he has or his blast counts or any of that. He's vague about it when i ask him and I' ve yet to get in contact his MDS doctor. That's one of the reasons I'm here, so I can talk to his doctor and have an idea of what all the terms and meds and things mean. Anyway, that's my story.
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#2
Thu Oct 21, 2010, 08:55 PM
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Hi Dan, welcome! I was as befuddled as you 3 months ago. There's a lot of information about myelodysplastic syndrome that takes a while to digest.
People in these forums are very generous in sharing ideas if you have specific questions. As a place to start, here's some big picture information I found helpful in the beginning. http://www.mds-foundation.org/pdf/handbook-english.pdf
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#3
Thu Oct 21, 2010, 10:22 PM
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Another Good Book
Hey Dan!
CathyBee is right. There's tons of good introductory info out there. My favorite intro manual (so far) is the one from the Leukemia and Lymphoma Society. You'll find it here: http://www.leukemia-lymphoma.org/att...1218469496.pdf You can also order a great info packet from the AA&MDS Foundation here: http://www.aamds.org/aplastic/information_packet/ Take a look and ask questions on this forum. Plenty of folks will help. I wish I had a simple "What to ask your Dad's doc" list. Maybe we can all create one together. Take Care! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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#4
Fri Oct 29, 2010, 03:55 PM
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Well...crap.
 My dad had two strokes last weekend. A "mild" one on Saturday around lunchtime at home, then a devastating one sometime Saturday night/Sunday morning in the hospital. He passed away Monday at 4:40 PM. I'll still be lurking to get more insight and closure, but I don't know how much I'll feel like participating for a while. This sucks.
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#5
Fri Oct 29, 2010, 06:39 PM
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Dan,
I am so sorry to read of your Dad's passing. I hope you will be able to find peace and comfort in knowing that he is not suffering. God bless you and may your memories of your Dad sustain you during this time.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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#6
Fri Oct 29, 2010, 06:58 PM
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Dan, I am so so sorry. There are no words to make this better for you and your family. But thank you for letting us know.
Catherine
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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#7
Fri Oct 29, 2010, 10:03 PM
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Dan,
I hate to hear that. I lost my Dad when he was 72, so I know it's no easy ride. But he was quite the character, and lives on in the great stories we tell about him, the way everybody in the family still uses some of his favorite expressions (Most of which can't be repeated on a family-oriented forum), and the way my brother walks with exactly the same gait as my old man. Thanks for coming here and trying to help him out by learning about his disease. I'm sorry you didn't have more time to work on it with him. Take care. Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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#8
Sat Oct 30, 2010, 12:43 AM
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Dan,
Our condolences. It's a shame you didn't have him longer. I hope he didn't suffer and that your good memories of him will lessen the pain of losing him. When you introduced yourself here you said he was vague about his MDS, but he must have appreciated the efforts you made to help him. I hope you have other family members around you at a tough time like this.
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#9
Sat Oct 30, 2010, 07:50 AM
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Dan
So sorry for the loss of your father. I lost my dad two years ago and it still is hard. I am sure he was proud of you and what a wonderful son to have been looking out for his health. Bless you.
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Susan Patient, 58, MDS, UPDATED 9/13 Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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