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MDS Myelodysplastic syndromes

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  #1  
Old Tue Nov 9, 2010, 01:49 PM
bebop bebop is offline
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My dad

he has stopped making plts now. last 3 weeks has had 3 or 4 units and tomorrow gets 2 more. I found out his hip pain is part of the end stage. I am so sad today.
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  #2  
Old Tue Nov 9, 2010, 02:34 PM
cathybee1 cathybee1 is offline
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I am so so sorry to hear this.
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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  
Old Tue Nov 9, 2010, 02:46 PM
bebop bebop is offline
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thank you cathy. today is one of those days I just hate. I hate everything about mds. I hate watching my dad go further downhill every day. Not knowing how much longer I have with him is tearing me apart. maybe I am obsessing too much about it but he is my rock.
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  #4  
Old Tue Nov 9, 2010, 04:29 PM
cathybee1 cathybee1 is offline
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Nothing anyone can say can make it better. Or easier. I'm thinking a lot about you today.
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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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  #5  
Old Tue Nov 9, 2010, 04:47 PM
Gene_In_Va Gene_In_Va is offline
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Cathy,

So sorry to hear about your Dad.

I'm thinking about you too.

Gene In Va.
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Male age 64 Dx:RA Del(5q-) Intermediate -1. Dx'd 09/2009 Taking Revlimid 10 mg/day since 11/2009 - now tx independent and normal counts. 2nd BMB results from 5/15/2010: 6 of the 20 specimens now show normal cytogenics.
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  #6  
Old Tue Nov 9, 2010, 06:40 PM
bebop bebop is offline
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Cathy I hear ya hon. thank you so much for your support!


Gene thank you.
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  #7  
Old Tue Nov 9, 2010, 07:30 PM
mausmish mausmish is offline
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Very sorry about your Dad.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #8  
Old Tue Nov 9, 2010, 08:01 PM
Al's Wife Al's Wife is offline
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I pray that both you and your Dad will have strength and peace. Try to remember the good times and try and enjoy each and every moment with him. Don't dwell on tomorrow or what the future holds, it will come soon enough. God bless you and know that there are a lot of us here who are here for you.
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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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  #9  
Old Thu Nov 11, 2010, 04:25 PM
launch launch is offline
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So sorry to hear about your Dad and that you and your Family are going through this ordeal. I will keep you in my prayers....

Hugs, Cindy
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #10  
Old Fri Nov 12, 2010, 08:32 AM
Gloria J Gloria J is offline
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Hoping your Dad is hanging in there, and know that there are a lot of prayers and good thoughts heading your way. Stay strong, take it one day at a time,

Gloria
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Gloria, early 50s, dx SAA Summer 2007, Pred July 07, Rituxan Aug 07, dx PNH Feb 2008, ATG Apr 08, began Soliris 5/31/11
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  #11  
Old Sun Nov 14, 2010, 09:26 PM
bebop bebop is offline
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He is still hanging in there! Today he looked really tired and the lower lids of his eyes were kind of red. He is really tired but loves so much to be around people. Now I am sick and can't be with him. that makes me really sad.
I want to thank you all so much for the love and support here. outsiders really don't understand what we all go thru.

We had to go to a funeral today. It hit me really hard. It is in the funeral home we will be using for Dad. His plts are going down weekly to around 12 or so. I don't know how long he can last like this with not making more.
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  #12  
Old Tue Mar 8, 2011, 02:06 PM
bebop bebop is offline
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when treatments stop

I think my Dad's dr is going to stop treatment in the next couple of weeks. right now he is getting 2 units of blood and 4 units of plts per week. I have tried looking it up but can't find my answer. Does anyone here know how long he will have once it is stopped? Yesterday his plts were 6 and that is after 1 unit on Friday. oh his hemo count was 10.9
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