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#1
Fri Mar 7, 2014, 12:38 AM
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5 month post bmt
Hi y'all just wanted to give an update my husband is 5 months out and doing really well. Glory to God! I am looking forward to when he is 'more in the clear' but it's nice to not be in constant fear and more in a watchful eye mode!
I know everyone's experience is different but I wanted to share my husbands. God bless to all of you on this site! Pt,loved one,caregiver etc
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim 
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#2
Fri Mar 7, 2014, 09:42 AM
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Heather, it's great to hear that Ron is doing well...
I'm at D+127 already, and things are going well for me also... Off to the doctor this morning for my monthly check-up... (monthly, crazy)... God is good...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#3
Fri Mar 7, 2014, 09:25 PM
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Thanks for the update Heather. I'm happy to hear that Ron is doing really well. It's nice to hear good updates too.
Blessings for continued healing.
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic... 
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#4
Fri Mar 7, 2014, 10:37 PM
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Dave monthly that's awesome!!!! So happy your doing well!!! My husbands still at bi weekly visits but about to move to monthly
 I saw your FB 100 day post! Your wife wrote such a sweet message! NLJ thank you so much!!! How are y'all?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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#5
Sat Mar 8, 2014, 01:18 AM
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This is great news Heather. It is great to see how well Ron is doing!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#6
Sat Mar 8, 2014, 01:20 AM
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Heather, thank you for the update with such great news.
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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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#7
Sat Mar 8, 2014, 08:24 PM
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Heather- YAY!!! Congratulations to you & Dave. So happy to hear Dave's doing so well. Happy 5 months
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Dena Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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#9
Sun Mar 9, 2014, 11:22 PM
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Thx y'all so much and happy to see y'all are all well post transplant!!!
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim
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