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#1
Sat Nov 23, 2013, 12:40 AM
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PNH free!!!
Hi all my husband is day + 44 after transplant and we were told last week his flow cetometry test showed he is PNH free!
God is good!
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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
Sat Nov 23, 2013, 01:33 AM
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You CAN beat this disease! Congratulations to both of you!
You have definitely earned this result.
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#3
Sat Nov 23, 2013, 03:28 AM
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I am so happy for you. You have your whole life ahead of you both now.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#4
Sat Nov 23, 2013, 02:56 PM
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Thx y'all so much!
Now just positive thoughts, prayers, and lots of healing!
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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 Nov 23, 2013, 04:07 PM
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Awesome news...
Congrats to the both of you...
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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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#6
Sat Nov 23, 2013, 09:41 PM
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Thx wiz how are you? Are you close to being released?
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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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#8
Sun Nov 24, 2013, 02:37 AM
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God is Great! Congratulations to both of you...
__________________
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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#9
Sun Nov 24, 2013, 09:11 AM
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I've been outpatient since last Monday, I was released to the Hope Lodge NYC last Saturday D+17... (it's like a Ronald McDonald house for adults)...
I finally spent my 1st weekend home (Yesterday and Today)... Kids were happy / surprised to see me... Will be heading back to Hope Lodge tonight for my 4th outpatient visit tomorrow... Quote:
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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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#10
Wed Nov 27, 2013, 12:32 AM
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I'm so happy you were able to see the kids! It sounds like things are going well right now!
We have no children but 2 dogs that we have been allowed to see the last 2 weekends and it made us sooo happy 
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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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#11
Mon Dec 2, 2013, 07:32 PM
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Happy to hear all is going well!
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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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#12
Mon Dec 2, 2013, 11:53 PM
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Thank you mausmish! How are you?
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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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#13
Tue Dec 3, 2013, 06:51 PM
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Going for my three year post transplant checkup on Thursday. So far, so good!
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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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#15
Thu Dec 5, 2013, 11:36 PM
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Quote:
__________________
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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#16
Thu Dec 5, 2013, 11:37 PM
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Quote:
how is Doug!? How are you?!
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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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#17
Fri Dec 6, 2013, 09:18 PM
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We are doing well. Doug is improving but it is slow.
Right now they are a little concerned about his weight loss. He is eating fairly well but continues to lose about 5 pounds a visit. He also has a mild rash on his chest and stomach. The doctor thinks that it is another round of mild GVHD and he is on his second packet of steroids. But, his hemoglobin is 14.9!!!! We haven't seen that in months. His platelets are at 62. They have been all over the place from 300 to 42. Now they are rising and hopefully stabilizing. I know that a little GVHD is good, but it always makes you so nervous. I will say that he has had more energy with the rise in hemoglobin. We are at day 59. You guys keep up the great work. We all want good news--especially this close to Christmas Deb
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#18
Fri Dec 6, 2013, 11:50 PM
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Deb yes it's slow for us too but from what Ive gathered, slow seems to produce great results GVHD wise (IDK if that's AA specific or includes MDS to be honest but I hope both!!!)
My husband is already pretty slim so loosing 20lbs was a lot during transplant. I bought vanilla ice cream, muscle milk powder (and another powder from trader Joes) and milk (sometimes I do chocolate, or eggnog or chocolate egg nog) we make this shake daily and it has helped put the weight back! plus some vitamins back. Great news about the HGB!!! My husband is at 12.8 hgb, plts 170 and WBCs 2.5 (needing neupagen now and then) his hgb is the highest it's been since his first visit to get DXed. It worries me he's overdoing things w this new energy but I'm happy he has it. GVHD is worrisome. God has blessed you with positivity and your husband is blessed to have you as his cheerleader! cling to that positivity. That's all the advise I have on that bc I cling to it as well. Glass half full.... Y'all will cont to be in my prayers our friends!
__________________
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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#19
Tue Dec 10, 2013, 03:37 AM
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Great news Heather & Ronald!! I remember when my energy came back & it's such a great feeling.
Cheers,
__________________
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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#20
Wed Dec 11, 2013, 03:24 AM
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Awesome news!!
So happy for the good news!
After one year since my BMT, my blood or platelet counts are still not as good. So you guys are doing just great, and I hope you will keep on going and getting better and better. But don't get all relaxed about eating, washing hands etc. its flu season and you don't want to be admitted because of a head cold. Keep us posted
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#21
Sat Dec 14, 2013, 12:05 AM
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Dena and Tii thank you
He is loving having all this energy! He's a bit restless but knows it is important to follow the rules. How long did it take for y'all to have all counts in normal range?
__________________
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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