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MDS Myelodysplastic syndromes

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  #1  
Old Mon Apr 4, 2011, 04:30 PM
bebop bebop is offline
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dad
Dad's transfusions stop tomorrow. he is very weak.
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  #2  
Old Mon Apr 4, 2011, 08:16 PM
Neil Cuadra Neil Cuadra is offline
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Elaine,

We know how hard this past year has been for you and how dedicated to your Dad you've been. You have our best wishes whatever the future brings.
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  #3  
Old Tue Apr 5, 2011, 04:17 PM
bebop bebop is offline
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thank you so much Neil.
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  #4  
Old Tue Apr 5, 2011, 09:25 PM
Chirley Chirley is offline
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Hello Elaine,

Nothing I say will help but I just wanted you to know I'm thinking of you, your Dad and the rest of your family.


Sincerely

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #5  
Old Wed Apr 6, 2011, 09:17 AM
bebop bebop is offline
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thank you Chirley. it is so scarey right now. I have sat with many dying people and been fine but I am terrified this time.
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  #6  
Old Wed Apr 6, 2011, 07:43 PM
cathybee1 cathybee1 is offline
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No words can help. So so sorry. You dad is a fighter for sure.
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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  
Old Wed Apr 6, 2011, 10:10 PM
mausmish mausmish is offline
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Sending you and your Dad comforting thoughts - so sorry there's nothing to say to make it easier.
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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 Thu Apr 7, 2011, 09:27 AM
bebop bebop is offline
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thank you all so much for all the support during this horrible journey.
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  #9  
Old Sun Apr 17, 2011, 09:37 AM
bebop bebop is offline
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Dad is still with me. not sure how much longer. tuesday will be 2 weeks since his last plts though so I don't think it will be much longer. he is very weak and his mind is just not what it needs to be. please keep us in your thoughts and prayers.
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  #10  
Old Sun Apr 17, 2011, 01:51 PM
cathybee1 cathybee1 is offline
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Thanks for the update. I wish this journey was easier. So glad you're with your dad right now.
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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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  #11  
Old Mon Apr 18, 2011, 01:00 AM
Neel Neel is offline
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Not Much to say
Hello Bepop,

Dont have much to say in the scenario, however whatever may be the future , May god be with u and ur father. I have u and ur family in my prayers,

God Bless.


Regards,

Neel
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Father age 64 diagnosed with MDS RAEB-2, with 15%-18% blasts in October 2010. Only had blood and platelet transfusions. Ayurvedic treatment which showed result for arnd 5 months. Started Tahlidomide 100 mg started on 22 nd April 2011. Revolade 50 mg started on 2 nd april 2012.
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